Ehlers Danlos Syndrome in New Zealand

Tristan's operation was a huge success!!!!

2012-01-31T16:40:00.019+13:00

Hi Everyone,

I hope you are all well and pain free. I just wanted you to know that Tristan's operation was a huge success. His surgeon Zachary Moaveni was incredible and has created the most beautiful chest for my son. Poor Tristan was in sooooo much pain and the medication from the epidural made him very sick. Vomiting when you have had your chest reconstructed was one of the most painful things I have ever seen.

I honestly did not think that I could love my son anymore than I already do, but I can. He was absolutely incredible through this whole experience and he did not complain once.

Here are some photos of my incredibly brave son:

Already you can see that his chest is flat and looking very gorgeous. He was just sooooo incredibly brave. He is my absolute hero!!!! So there you are, my boy is fixed and is on the mend.

Love Rowena

X X X X

Wonderful News!!!!!

2012-01-11T16:18:00.003+13:00

Hi Everyone,

I hope 2012 has brought you happiness and pain free days. I just wanted to let you know that I do not have the vascular COL3A1 gene. That means that I am only a 'Classical EDS Girl' through and through. Actually what the test result said was: 'NO MUTATION IDENTIFIED IN THE COL3A1 GENE'.

My genetic counsellor was so lovely and when he told me he had good news for me I bursted into tears. Tristan and I were both so relieved as it meant that my baby didn't have it either. This also meant that we did not need to cancel his operation.

Some more amazing news was that with my MRI results, my dilation was actually slightly smaller than first diagnosed on the echogram and I am classified as only having a midly dilated aortic root, which is a characteristic of Classical EDS.

So there you have it. I feel like I can push play on my life again and take it off the pause button. I just wanted to say a huge thank you to all the lovely people who sent we wondeful wishes and fingers crossed, it really helped knowing people were out there and caring about me.

Love Rowena

X X X X

Torrow I will know!!!!!

2012-01-10T13:20:00.002+13:00

Hi Everyone,

Hope you are all well and happy? Just wanted you to know that tomorrow at 11.00am (NZ time) I will know the results to my gene test. I will let you know!!!

Rowena XXX

Tristan's Operation is happening!

2012-01-04T18:57:00.003+13:00

Hi Everyone,

Happy New Year and I hope you are all well and pain free. My new year started with some amazing news. My gorgeous baby has an operation date: 27th January 2012. He has waited soooo long and he has been very paitent. So on that day he has his chest reconstructed and then his healing can begin. I am not just meaning physically but mentally as well. He has found his chest a real cross to bare and he has fallen into the silent shame of hiding his chest from the world. It is hard enough to be a teenager these days without having to deal with physical differences as well. I remember having so many scars on my legs from all of the stitches I had as a child. I would hide my legs at every opportunity and when people would stare at my scars it felt as if they were actually touching them. The shame I carried with my scars was exhausting and really difficult to live with at times. So I am so happy for my baby that he is getting his chest fixed and his confidence can be restored.

Another bit of lovely news is that my MRI results about my aortic root are in. My genetic counsellor said that it is still in the mildly dilated stage. This made my day! I am still waiting for my gene test to come back from America (so come on now America) but he tends to think I am only going to have Classical EDS.

What a great start to 2012!

Love Rowena

XXXXXXX

Waiting?

2011-12-27T19:39:00.004+13:00

Hi Everyone,

I hope you are all well and I hope that Christmas was a very special time for you and your families. I was hoping for Christmas that I would get my 'ALL CLEAR' news from my genetic counsellor. Unfortunately, I heard nothing. I just can't seem to think about much else. The more I search the Internet, the more I keep stumbling over 'scary facts'. I have joined the website Inspire: https://www.inspire.com/ . It is full of wonderful people who are strong and truly inspiring. They have every type of EDS and all of them deal with their symptoms in their own unique and powerful way. I just feel that the unknown is just a huge grey area. As a person who only lives in the 'black and white' areas of her life, the 'grey' just does not suit my personality at all.

Many people believe that everyone is meant to learn a lesson during their lives. It may be to be more caring, empathetic, kind, trustworthy or to have patient. I believe mine is patience!!! Waiting for this news has made me look over my life and realise a very wonderful thing...........I am truly blessed.

I know that people who look at my blog only know the medical facts about me but what you don't know is that I have the most wonderful life. I am a mother to my gorgeous Tristan who is such an incredible, kind, loving and very funny teenager. I am a daughter to a mother that adores me and tells me everyday how special I am. I am a daughter to a father who tells me he is proud that I brought my son up on my own. I am a sister to 5 incredibly talented siblings who I am extrememly proud of. I am friend to the most amazing women who love me unconditionally. And I am a teacher who loves her career and adores the families and the children I have been lucky enough to have spent the last 8 years with. I am truly blessed!

So, no matter what the outcome, no matter what the results, I will always be able to say that I am so much more than the 'genetic cards' I have been dealt. EDS will never just define who I am or shine brighter than everything else I have in my life. Once my results are in I will deal with them because there is nothing else I can do. So hurry up results, hurry up genetic test tube guys in Seattle, U.S.A and hurry back to NZ and to my genetic counsellor. Then once I have them, I can continue on with my blessed life and be armed with all of the 'black and white' facts.

Take care everyone.

Love Rowena XXXX

Dr. Diana is fantastic!

2011-11-02T20:35:00.003+13:00

Hi Everyone,

I hope that you are well and pain free. I have just discovered the neatest person ever on 'You Tube'. Her name is Dr. Diana and she is a doctor and a paitent who has Classic EDS. I am over the moon to have found her. Her video's are so clear and easy to follow. When she ran through the Classic EDS characteristics I had all 9 like she does. It is just so wonderful to know there is a doctor out there in the world who actually knows what it means to have this condition and who is actually studying and helping people with it. If you want to know more, her website is: www.PrettyIll.com.

Love Rowena

x x x x

8 weeks for results!!!!!

2011-10-18T10:51:00.005+13:00

Hi Everyone,

I hope you are all well and pain free. Well back in July I went to genetic counselling to determine whether I had Type 4 EDS as well as Classic EDS. Well, through visual tests I didn't, yay! Today I spoke to my genetic counsellor and because my aortic root has continued to dilate, he is now sending me to have the Vascular gene test. I cried.

I have recently visited a cardiologist who has stated that my aortic root has dilated to 4.3cm. At 4.5cm they will have to do surgery to fix it. That means that basically they cut my chest open and put a synthetic band around the aortic root so it will not burst. So that was bad enough news and then today there was the news from my gentic counsellor. I am starting to feel like I need just a break from the negative news and have some wonderful news coming my way.

My son has been accepted to have his pectus excavatum operation done within the next 6 months. He is super excited about this, I am super nervous. It means he will no longer have a dent in his chest and he will feel so much more confident to take his shirt off when he swims.

So, fingers and toes crossed that the vascular gene test will come back as not being identified and that this silly heart dilation is just a thing that has happend.

Love Rowena

x x x x

No more worrying for us!

2011-07-10T07:49:00.004+12:00

Hi Everyone,

I hope you are all well and pain free. I have some very happy news to share with you!!!! My son and I went back to the Genetic Service at Starship Hospital on Wednesday. After the Genetic doctor gave us the once over he was convinced that we did not have a single characteristic of Type 4. I burst into tears as we were just so relieved, I even hugged him and his assistant. Then he told me something that has had me smiling for days. He said that my son Tristan had less characteristics of Classic Type EDS than me. He explained it as my Classic EDS genes being watered down and Tristan's fathers genes being in the mix helped to water it down even more. So when Tristan has babies (and I sure hope he does), the same thing is bound to happen. YAY!

Through this whole ordeal of worry, I am just so relieved for my son more than anything. I did not want him to have any worry about my health every day and I did not want him growing up knowing that he may lose me early. The only thing that the Genetic doctor was mildly concerned about was that I have a slight dilation of the main artery in my heart and I am now going to be monitored every 5 years or so to keep an eye on it. This is a characteristic of the Classic Type.

So there you have it, wonderful news for the Brewer family and now my son can have his operation that he desperately wants. The doctor did say that he is slightly confused why Tristan has Pectus Excavatum and Scoliosis of the spine as it is not a Classic EDS problem. I am so pleased I made the appointment to see these Genetic doctors. I would tell everyone that was diagnosed years ago to have another appointment, as so much has changed over the years in the study of genetics. It is so good to know that people are doing amazing things to help people with Ehlers Danlos Syndrome.

Love Rowena XXXX

Scared, Frightenend and just Confused!

2011-06-26T16:47:00.002+12:00

Hello Everyone,

I am just confused????? My whole life I have been told that I had Classic EDS. Nothing had changed, my syptoms didn't changed and my life was just the same. I had my artery dissection in 2007 and the Doctor asked me if I had Type 4. "No, of course I do not have Type 4???" "Do you think you should be retested?" "NO!!!!!" I had all the characteristics of Classic EDS, right down to the 'Subcutaneous spheroids' the small cyst like, hard shot-like nodules, freely moveable in the subcutis over the bony prominences of the legs and arms'. But No......... Since the 2007 EDS review of the Classic Type, there is now a possibility of ..... 'The clinical findings of 'overlap' with the Classic Type'. These are the possible overlaps:

* Type III: Hypermobility Type
* Tenascin X Deficiency
* Familial Joint Hypermobility Syndrome
* Progeroid Form
* Kyphoscoliotic Type: Type VI
* Arthrochalasia Type: Type VII A & B
* Dermatosparaxis Type: Type C

The scariest of all TYPE 4: VASCULAR TYPE:

I am so sorry to all the Type 4 people that have lived with this since childhood or the people that have just been diagnosed, but it is scary. Life expectancy is aged 40 years and 'the median age of death is 48 years'. I am 39 and 10 months.

On July the 6th at 9am, I am going back to hospital with my gorgeous Tristan to find out our fate.

Love Rowena X

Tristan finally got his Surgery Appointment!

2011-05-09T18:45:00.003+12:00

Hi Everyone,

I hope you are all well, happy and pain free. My baby finally went to visit the Reconstruction Surgeon to mend his Pectus Ecavatum. Well we really wanted to go for the Nuss Procedure but the Surgeon told us the side effects and we have definitely changed our mind. He told us that the metal bar that they surgically insert can actually graze the heart. Well that freaked me out straight away. He also said that it can cause on going pain for years later. Because this is a cosmetic surgery and Tristan doesn't need it for health reasons, I just don't want him to be in pain. So we have decided to take option number two: Open surgery is more traditional.

* In this method, the surgeon makes an incision (cut) across the front part of the chest.
* The surgeon removes the deformed cartilage and leaves the rib lining in place. This will allow the cartilage to grow back correctly.
* The surgeon makes a cut in the breastbone and moves it aside. The surgeon may use a rib or a metal strut (support piece) to hold the breastbone in this normal position until it heals. Healing will take 3 to 6 months.
* The surgeon may place a chest tube to drain fluids that build up in the area.
* Metal struts will be removed in 6 months through a small cut in the skin under the arm. This procedure is usually done on an outpatient basis.

The Surgeon told us that this was definitely the more evasive way to go, but he will not have a foreign object in his body that may dislodge if he had a hard enough bump. He will be in hospital for up to 7 days.

Of course I am already so worried and so nervous and wish he didn't have to go through this at all. But Tristan wants to do this and so I have to be supportive and keep him as healthy as I can before the surgery date.

The next step is to get his heart looked at and then back to the Surgeon to let him know what path we are going to take. I will let you know how it goes.

Love Rowena

x x x x

Tristan's Surgery Update

2010-12-01T19:30:00.003+13:00

Hi Everyone,

I hope you are all well and pain free. I just wanted you to know our updates. I recieved a letter from the Manukau Super Clinic a few weeks ago. They said we now have to wait for 6 months just to have an appointment to see the plastic surgeon to examine Tristan's chest. I did think that perhaps his surgery may be of happened in that time but alas, patience is what we need.

I also just wanted you to know that since the letter, my son has gone on to be the 'Best High Jumper' for his age in Central Auckland. Next Thursday he goes to the Championship Athletics to jump for the title for the 'Best High Jumper' in the whole of Auckland. I am monstrously proud and I am so pleased he had an opportunity to experience this before his surgery.

Love Rowena

x x x x

Tristans Hospital Appointment finally arrived!

2010-09-11T10:41:00.009+12:00

Hi Everyone,

I hope you are all well and painfree! Well my boy finally had his hospital appointment. This is what they found:
* He has scoliosis of the spine.
* His shoulders are hunched.
* His hips are out of alignment.
* His pectus excavatum (sunken chest) needs to be operated on.

So the list is much bigger than I thought. But do you know what my gorgeous boy worried about throughout this whole appointment, that he wouldn't grow to be 6 ft, 4". The doctor told him that they think he won't grow for very much longer as his bone density of his pelvis bones showed this. He is already 5ft, 8" so he is tall enough. The silver lining on his growth slowing down is the fact that his spine, shoulders and hips will not have to be operated on as the curvature of all of them will stop, once he stops growing. So prayers, prayers, prayers that my baby stops growing very soon. His sunken chest is now being referred to a plastic surgeon who deals with skeletal deformities and this is going to be fixed, thank goodness. Tristan will now be under the care of Starship Hospital for the next two years to see if he needs anymore operations. Every six months he will need new xrays just to be sure.

So we waited almost a year for this information and it looks like things are going to be okay, due to the fact that none of his internal organs are being affected. He is such an amazing boy and just takes all of this in his stride. I am so blessed having such an amazing kid!

Love Rowena X

EDS is alive and well in NZ!

2010-09-03T20:17:00.002+12:00

Hi Everyone,

I hope you are happy and well. I just wanted to post a quick link for you to see the funniest bloke I have seen in a long time who actually has EDS. See, some of us use our talents for laughter, which is the best cure! Check him out!

http://www.youtube.com/watch?v=E8kak_pbgIk

Love Rowena

x x x x

I feel so proud!!!!

2010-08-21T12:50:00.013+12:00

Hi Everyone,

I hope you are all happy and pain free, or at the very least, a little pain-less! I was so shocked this morning when I opened up my email. I have been awarded with this Community Leader Award for my EDS Blog. I actually burst into tears. I am an emotional wreck at the best of times, but I felt so proud. As many of you already know, I have been contacted by so many wonderful people who just needed to share their stories and not feel so alone with EDS. I just want to say a 'HUGE THANK YOU' to all of you, for your strength, at times your prayers and for the information that I have learnt from you. In turn, I get to share all of this with my son, so he grows up with the strength of knowledge and without a moment of uncertainty. For all of this, the words 'thank you' aren't enough, but......thank you!

Love Rowena X

P.S: Tristan's Hospital visit is on September 10th (we have had 5 cancellations) so fingers crossed we get there this time!

Lumbar Puncture gone 'BAD'!

2010-05-22T09:33:00.007+12:00

Hi Everyone,

I hope you are all well and pain free. Well I had another small visit to the hospital! I had another terrible headache (by sky rocketing blood pressure). After another CT scan, the doctors thought a lumbar puncture was the best option just in case I had experienced a brain bleed. Well prasie the Lord I didn't and it was a gigantic shame that I did have the lumbar puncture as I suffered dreadful side affects form it. I had the worst headache I have ever experienced in my life and it lasted 118 hours (even worse than my artery break). I was amitted back into the hospital 4 nights later and they discovered that spinal fluid was leaking out of my spine causing the Lumbar headache. The word headache really suggests that I had a slight pain, O.M.G.....I physically could not stand up and even had to crawl on my hands and knees to the bathroom. I could not sit up straight for 4 days and honestly I really got to the point where I just wanted one of my wonderful friends and family to smoother me with a pillow. The sad thing was, is that I had rung the hospital after 2 days saying I was in great pain and the lady I spoke to just said the pain would pass with rest. Yesterday I was given a 'blood patch' which was 20 mls of my own blood injected into the hole in my spine to cause a clot. Within moments the pain had gone, it was a miracle. The Doctors affectionately called it 'Voodoo' and they just can't explain why this actually helps so quickly. I tell you what else gave me some relief and that was 'Diet Coke'. The caffine in the coke gave my brain the ability to produce spinal fluid quicker and for a while the relief was good!!!! So today I am myself again. I have a teeny bit of lower back pain and I am a bit stiff but I feel like 1 Billion dollars!!!!! I feel so blessed for my Mum for taking care for my son and all of my friends for their love, their prayers and support they gave me. Don't live with pain because you worry about not waiting the right amount of days for things to heal, get the support you need and listen to you own heart to know what feels right and what definitely feels wrong!

Take care of you!

Rowena X

P.S: Still waiting for my sons hospital appointment, will keep you posted!

Not my Baby!!!! Give this to me!!!!!

2010-04-03T12:42:00.007+13:00

Hi Everyone,

I am just sending this post out into the abyss. In return all I can ask for is kind thoughts and prayers for my baby. I have noticed over the last year Tristan's chest becoming more and more sunken. Tristan didn't want to talk about it and so I just kept an eye on it. I went on the internet and this is what I found out.

Pectus excavatum is a congenital disorder which causes the chest to have a sunken or "caved in" appearance. It is the most common congenital chest wall abnormality in children. Typically the disorder is noticeable at birth and becomes more noticeable during the rapid growth period of adolescence. The severity can range from a moderate indentation in the chest to an extreme concave depression that can constrict the internal organs.

A few weeks ago I had to take Tristan to the doctor for an infected toe. I asked the doctor to look at his chest and his spine. She said that his spine is crooked and he does have a sunken chest. She has referred us for Paediatric care at Starship Hospital in Auckland and now it is just a waiting game, waiting for an appointment.

There are things they can do to fix it but this looks like the scariest. My concern is that Tristan has finally found a sport that he loves. He hasn't been able to play any sport competitively due to his EDS and his skin tearing, so he has found Basketball and he is amazing. Now this has turned up. I am going to have one small "AAaaaahhhhhhhhhhhh!" moment. It is just not fair; he has EDS, he has a heart defect, a father who is missing in action in England and who doesn't give him a second thought and now this with a crocked spine thrown in. THIS IS ENOUGH NOW..........THIS IS ENOUGH!!!!!

I always find the silver lining, the postive out look and know in my heart of heart that everything is going to be okay, but today I just feel a wee bit mad!

I do hope that all of you that read this are in good health, surrounded with happiness and peace.

Love Rowena X

Pain, pain go away!!!!!

2010-02-24T16:26:00.005+13:00

Hi Everyone,

I finally know what the pain in my finger joint is. A while back I had sharp pains in my wedding finger joint and I was worried that my joint may dislocate. Two days ago it got so much worse and the pain was hideous. I went to the doctor today as my whole knuckle and top of may hand blew up. People at work thought I may have been bitten by a spider, but there was no puncture marks. So I got checked out and you won't believe it, it is Arthritis!!! I am 38 and I have Rheumatoid Arthritis. So home I came and went straight on the Net. I found a great video that explained about Rheumatoid Arthritis: http://video.about.com/arthritis/Chronic-Rheumatism-Hand.htm.

So my silver lining is......it could be so much worse and my joints could have started to dislocate. I don't want to have to start taking all these different drugs like Voltaren that can make your stomach upset, so I am going to go down a semi-Natural Remedy route if I can. This is what the experts have suggested:

*Acupuncture
*Adrenal extract
*Balneotherapy
*Beta-carotene
*Burdock
*Copper
*Ginger
*Magnesium
*Magnets
*Methyl sulfonyl methane (MSM)
*Molybdenum
*Pantothenic acid
*Probiotics
*Selenium
*Turmeric
*Vegetarian/vegan diet
*Vitamin B6
*Vitamin C
*Vitamin E
*White willow
*Yucca
*Zinc

So my Net research continues and I will keep you up to date with any new Natural Remedies. Hope you are all still finding silver linings with your EDS and know I am sending you all healing thoughts.

Rowena X

OH NO.....NOT AGAIN!!!!!!!!

2010-01-30T13:30:00.009+13:00

The Angels must have been looking down on me again. On Sunday I had another sharp pain in the back of my head. By Tuesday the left side of my face was numb. If you have been checking up on my Blog, 3 years ago I had an artery dissection. Anyway, I went to the doctor and I was sent straight to hospital. The Accident & Emergency Doctors thought I had possibly had a stroke, cerebral bleed or my artery had dissected again. I cried and cried and I was so angry that my life finally felt like it was on track and this had happened again. Then came the test:
* 7 X-rays of my chest and neck,
* CT scan,
* MRI scan,
* Blood test,
* Stroke examinations with 4 Neurology doctors,
* And a very horrible drip in my wrist pumping litres on fluid into my blood stream.
I was in hospital for 49 of the longest hours waiting for my results. Finally, the Neurology team arrived. They all looked at me and I held my breath. "What has made my face numb?" There first response was "We do not know?" So I said "Okay, then what did you find?" Because my face was still numb and I had a dull, heaviness in the back of my head I thought it had to be something. They said..."There is absolutely nothing wrong with you". I couldn't believe it, I actually clapped for what seemed like several minutes. My brain and arteries were healthy and nothing had been damaged. The most amazing news was that a Neurologist told me that they were really pleased to see that my past dissection had healed so well that they couldn't even tell that it had been damaged. I left the hospital 15 minutes later with the biggest smile that my face had felt in a very long time. The great thing was, that it didn't happen again and I was healthy and lucky enough that I could go back to the life that I am enjoying being part of so much. The final diagnoses was that it may have been a facial migraine. I now affectionately have the title of "DRAMA QUEEN" at my school as I worried everyone so much and ended up being fine!

Love Rowena X

I Ran the Whole Way!

2009-11-01T10:38:00.005+13:00

Hi Everyone,

Well I did it! I ran the whole 1/4 Marathon in 1:21 minutes. My personal goal was to run 5 kms and walk the rest but I just kept on running. After 5 kms I thought that I would just keep on going to 6 kms and before I knew it I was at 7 kms, then 9 kms and I thought I am not stopping now! So I ran 10.5 kms today and I didn't fall apart. My poor leg muscles will not be talking to me for quite some time, but I was so proud of my body dealing with the strain. So my EDS and I did it. I wore my hat and actually I smiled the whole way as I was just amazed with my own determination. When I was walking back to my car I burst into tears, not from pain of anything like that, just from the share delight that I ran the whole race and made it to the finishing line!

Love Rowena X

One More Day!

2009-10-31T08:14:00.006+13:00

Hi Everyone,

Hope everyone is happy and healthy? I have been getting ready for my Quarter Marathon. Now to tell you the absolute truth, the thought of getting up at 5 am in the morning and starting the run at 6.45 am does nothing for me (at all) but at times when things are feeling a little daunting little reminders pop up from nowhere to remind me I can do this. I watched the news last night and it was about the New York Marathon (42kms/26 miles long), I am running 10.5kms/6.5 miles (HUGE DIFFERENCE), but the message was the same. There were people their running for their friends who had died from the most horrific illnesses and who had always wanted to run the marathon in New York. I burst into tears (of course) and just knew that the love we have for people who can not be here is so powerful, that these friends who have never exercised, will carry their love in their hearts all the way to the finish line. It made me think that I can do that for EDS - at times very much not my friend, but EDS is the constant entity in my life and I choose to see it as a friend and not a foe. So here is my little message to all of you out their who has EDS in their life, this is what I will be wearing while I run (and walk) because even people with EDS can stand tall and carry this all the way to the finish line with a smile on their face and the knowledge that we are not alone.

Love Rowena X

Every cloud has a silver lining!

2009-08-29T22:29:00.008+12:00

Hi Everyone,

I hope you are all healthy and happy. Now I have been on a bit of a new life journey recently. I decided to loose weight as I said before and I am truly feeling so much healthier. I will say that the exercise has made a huge difference to my mind (endorphins ROCK) and I have been feeling healthier, but my arm joints have taken a bit of a hammering. The one thing that I have noticed happening recently is that my ring finger top joint on my left hand actually almost pops out! I will be holding something or just moving my hand and it will happen. The thing that makes me sad is that this in so minor compared to so many of the people that I have been in contact with recently.

It has made me realise how difficult it can be for the many of you with EDS and who have constant joint pain and dislocations. My heart goes out to you as it is debilitating and just unfair. I know that I am all about looking on the 'bright side', and we have too, but I do just want to send this little black cloud out there, to say I am so sorry that you are experiencing this! The silver lining on that cloud is that we are all here for a good time, not a long time, so enjoy the ride no matter what!

Take care

Rowena X

M.I.A................ (Missing In Action)

2009-07-10T16:33:00.005+12:00

Hi Everyone,

I have been missing in action due to my computer being sick and needing a whole new hard drive. I have been reluctant to post emails at work as Teaching in schools means incredible Internet security and it basically shuts you down if the system is not happy with the web page you are on. So I have been a frustrated non-Internet user. The really funny thing is, is I also lost my cell phone and started to think that technology was no longer my friend. Which then made me think of how reliant we are on technology. I was almost going to take up the art of 'Smoke Signals' it got so serious there for a moment. I did manage to check me emails at friends over the many weekends I was without my laptop. I was really happy to receive messages from 4 new people who have or have suspected Classic EDS and they just dropped me a line to say I was not alone. Which brings me to the tragedy of MJ's Death and his famous song...."You are not alone", soooo sad; I really know I am not alone, thanks to all of your comments. I feel so blessed that I started this Blog and it was such a treat today logging on and seeing my World Cluster Map.......... "Hello World and Hello to all the gorgeous people out there who have dropped by to take a look at my Blog. We are not alone and I am so happy to say a lovely lady from the USA called Nancy just dropped me a line to say "that she hoped I was well".

Well I am really well and fighting fit. Actually I have been going to Weight Watchers and lost a staggering 12 kilos (26.4 pounds). I have joint the gym and also signed up for a 1/4 Marathon in November. I thought, you never know when your body will change, but my body has been behaving itself long enough to see me through to my 40's (fingers crossed). After my extensive research about EDS, I have realised just how lucky I am that at 37 I am still walking without pain. I really want to show my son Tristan that while our bodies are strong and healthy that we can accomplish many extraordinary things in our lives, whether that is to run a 1/4 marathon or climb a huge mountain, it is the fact that we can move without pain and we can run, jump, dance and skip, we are the lucky ones (as long as we don't trip up on concrete and need a million stitches). My baby is 12 and is such a teenager. You won't believe it, he is as tall as me. It happened 3 weeks ago. For 6 months, every morning as we brushed our teeth, he would stand next to me and would say "I'm just about as tall as you Mum". I would always reply...."NOT YET". Well 3 weeks ago I almost had a heart attack, he actually was as tall as me. I could not believe it.

Throughout 2009, I have been on a healthy 'Life Style Change' and I know he has been watching me. He has been asking about our bodies and how to add muscle as he wants a '6 pack', (it's an Arnold Schwarzenegger thing). I am so pleased he is looking at a healthy future now and that he has a healthy mother with EDS to show him we can be as strong anyone, we just have to be a bit more careful.

I would love to keep hearing from you so keep on sending me comments. "I'm Back.......thank goodness for the Internet".

Rowena X

Is Anybody Out There?

2009-05-17T20:21:00.003+12:00

It was so great getting someone responding to one of my posts. I was lucky enough a few weeks ago to have a lovely lady email me about getting pregnant with EDS. I felt really great being able to share my pregnancy and to put her heart at ease about getting pregnant. I was so happy to know that after reading my post and talking to her doctors, she has decided to have her baby after all. I seem to have so many people looking at my blog, but at times I felt like the only person in the world with EDS, but it was a total buzz to have someone contacting me! Then only a few days ago another woman simply said...."I know how you feel" and those few words made me smile and stopped feeling alone. 'A shared concern or worry if halved', or so they say, so let's get talking and sharing ideas so we have a support network who understands.

I'd love to hear from anyone........anytime!

Rowena

Dearest Oprah

2009-04-18T14:03:00.004+12:00

Dear Friends,

Now I thought that maybe because EDS is still a very quiet entity, maybe going to Oprah to hear our voices is a great place to start. Here is the letter I sent:

Dearest Oprah,

My name is Rowena Lee Brewer and I am from Auckland, New Zealand. I love your shows and I really like the DR Oz segments. I have a genetic condition called Ehlers Danlos Syndrome. I have started a Blog in New Zealand http://edsinnz.blogspot.com and I am amazed at how many people (who have read it) are from America. EDS is HUGE in America and I just thought as it can actually be undiagnosed for years, that maybe a small mention of the several different types may be a great way for people who may have this, to understand it. I have Classic EDS and so has my 11 year old son Tristan. We are so lucky compared to some people affected by the other types. I know overall this is a story about a very small part of the population, but awareness of any condition makes such a huge difference to the people who are affected and a voice can shatter the silence of living in isolation with any genetic condition. Thanks to your voice, this world has become a much more informed place to live!

Love Rowena

Fingers crossed she hears us!

Love Rowena

x x x x

Clear, concise & positive information!

2009-04-10T10:06:00.005+12:00

Dear EDS friends,

I have decided to start my blog entries like this after realising how many people have been checking out my blog! So hello there new friends!

Now, I always take time in the weekends to search the web for some more helpful information for myself, my son and this blog. I have found the best website for anyone who has EDS and wants to share this information with a family member or friends and also for people who have just been diagnosed. Here is the address: http://georgiahealthinfo.gov/cms/node/105606 gov/cms/node/105606

I am so impressed with how concise the information is and it is factual without scaring the pants off you. Well done Georgia Health, you have definitely got a 5 star rating from me! Take a look, it's great!

Love Rowena

x x x x

P.S: I had to share this amazing personal fact. My gorgeous baby now has bigger feet that his Mum. He also has the very traditional EDS flat feet just like his Mum too. This was taken on a weekend away in Raglan which is situated on the Wild West Coast of the North Island of New Zealand. The sand is black and full of iron shards.

The Princess and the Pea!

2009-03-22T19:57:00.006+13:00

When I grew up there was a fairy tale which I always thought might be about me. 'The Princess and the Pea' was a tale about a wee girl who didn't know she was a Princess. One night she is lost in the woods and turns up at a castle. The Queen somehow thinks she may be a Princess in disguise. So when she is shown to her bed chamber, the Queen has played a sneaky trick and put a pea under 13 (or so) mattresses. If she was really a Princess, in the morning she would feel black and blue from the pea pressing into her fragile skin under all those mattresses. The long and the short is.....she was indeed a Princess after all. Then I realised I didn't really know when EDS was first discovered. If you are lucky enough to ever read any Jane Austen books, there is always a frail, pasty character with a weak disposition, maybe they had EDS. So I have done a bit of research and this is what I have discovered.

Ehlers Danlos Syndrome is one of the oldest known causes of bruising and bleeding and was first described by Hipprocrates in 400 BC. Then Tschernogobow from Moscow published his findings about the fragility of the skin associated with hypermobility of the large joints in 1892. Edvard Ehlers, in 1901, recognized the condition as a distinct entity. In 1908, Henri-Alexandre Danlos suggested that skin extensibility and fragility were the cardinal features of the syndrome. Edvard Ehlers (1863–1937), Danish dermatologist, and Henri Alexandre Danlos (1844–1912), French dermatologist, who separately reported it in 1901 and 1908. So there you are. If you were ever wondering where the name came from or when it was first discovered here is the short and sweet answer!

Love Rowena

x x x x

"Calling All Classic's Out There!"

2009-03-01T11:00:00.002+13:00

DEAR WORLD,

You may have read bits about my life but I would really love to hear from anyone out there that has the same EDS as me, or anyone with any type. Drop me a line on this Blog and I can give you my email address. You don't have to feel alone in this huge world, I am here just waiting to share a line with someone who knows what you are going through! Can't wait to hear from you!

Love Rowena

x x x x

Sharing my scars for the first time.......again!

2009-02-12T17:22:00.004+13:00

I have moved to a new school this year. I am always very excited to take on new challenges and new journeys. I am a person who thrives on change, but I also have the odd reservation about change. I find that when I go into any new situation I am more confident when people don't know about my EDS and don't see my scars. I am not ashamed of them, I just don't want the questions to start, or the side way glances. As a child my scars where blue, they were raw looking and stood out. Now I have scars almost as old as me, they are a lighter shade of beige, but they are saggy on my knees (as my photo's showed).

On my 'Teacher Only Day' this year, we went to Long Bay which is a gorgeous beach. On the information I received about the day, it said to take our togs for a swim at lunchtime. My heart sank for two reasons. 1) Being in togs with people I didn't know made me want to throw-up.....silly girl thing. 2) My scars would have been completely visible. So the togs stayed at home and only a few people even ventured into the sea, thank goodness. I worried about it for weeks before the date which is such a waste of energy. You will never find me in shorts, short skirts and I adore the cooler months so I can cover up and not have to explain my scars away.

I am single again at the moment as well. I always dread the moment when I have to tell the new man in my life that I have scars. To date this has never been a real issue and my Mum was right...."The man who loves you will not even see your scars". It's true (even though my last boyfriend was a total creep about it) but again explaining my scars, then my EDS is not always the easiest thing to bring up in a new relationship and when is the right time to bring it up.

I was a bit sad on Tuesday when my boy came home from his new school and told me he wanted to cover his legs up so no one would see his scars. I knew how he felt and it really hurt my heart that he had to go through the same things that I did. Luckily a hug from me and knowing how he felt, hopefully made him feel like he isn't alone with EDS on this huge planet. I would love to meet people with EDS in New Zealand or around the world, just to show my son that in fact we are not alone!

Love Rowena

x x x x

Having children when you have EDS!

2009-02-06T11:17:00.005+13:00

I have already explained my pregnancy, but once my baby was here I would watch him sleeping and think, "Did you get my dominant genes or not?" Well once I came back to New Zealand I wanted to make sure. I made an appointment to see a genetic counsellor and was told I should wait until he was around 4 years old. So we waited. My mother knew he had EDS the moment she held him for the first time. It was how he felt, she told me that his skin felt just the way mine did as a baby. It was the craziest coincidence once I arrived at the appointment. Ingrid Winship was the person I was going to see and it turned out that I had been her sons Kindergarten Teacher. I had always known her first name but had not made the connection at all.

Well, Ingrid put my mind at ease immediately and said that if Tristan was to have EDS, then he would be fine because I was his Mum. She looked him over and saw his visible comparisons to EDS....flat feet, hypermobility in joints and velveteen skin. So it was official, my boy had got my dominant genes and he had EDS too. Ingrid was right, because I had EDS I could 'see' for my son where he may hurt himself, jar a joint and I knew how his skin felt and how gentle to be. Our skin doesn't feel connected to the muscle, so if someone pulls your arm skin, it feels as it is being pulled off, like a burning sensation. Brushing our hair is sensitive too, as our skin moves and pulls away from the scalp it hurts.

My son did have his first really big accident at almost 5 years old. He was helping his Mummy hang out the washing and was standing on a plastic chair. The chair wobbled and he slipped and he scraped his shin on the chair. I heard the cry and couldn't believe the gash and his skin was torn away from his shin bone. I couldn't think. I picked him up, and actually couldn't remember how to drive. My heart was thumping in my chest and I couldn't believe I was dealing with this so badly. I called Mum and thank god for her, she was able to calm me down and she took charge. We rushed to the A & E and they sent us straight to Middlemore Hospital. The gash was so deep it needed to be stitch inside and out. He was still only 4 so the doctor needed to give him a general anaesthetic as he would be having plastic surgery. Then I had to sign a medical waver and I lost it. I was so upset that I had to sign a piece of paper which told me that my baby may not wake up under the general anaesthetic. I signed it as I knew my baby needed to be mended.

Mum and I watched our baby being wheeled away screaming and wanting his Mummy. I have never felt so helpless in my life and I wanted to go with him. I wanted the split leg, I wanted the pain and I wanted him to never have EDS in the first place. I cried for the whole hour we waited to hear how he was.

It turned out he was absolutely fine, thank the heavens. His scar healed really well thanks to the fantastic plastic surgeon. He was up and running around within a week and he was given antibiotic cover for any infections that may occur. Tristan went on to have two more big scars but again he came through it and was a brave boy.

I just need to tell all the people in the world that may read this, that I truly believe that my Tristan is a blessing and the most amazing and incredible child any mother could ask for. Like me he takes his EDS in his stride and isn't a victim with it. He is happy, caring, kind and so special. I am truly blessed.

Love Rowena

x x x x

EDS and Pregnancy!

2009-01-31T09:46:00.017+13:00

When I was a teenager I was asked to return to hospital as I had started to ask questions about my EDS. It felt like I was still the only one in the universe. Through childhood and early teens I was teased mercilessly and gathered names such as Frankenstein! It always felt so strange that I got teased as my Mum had always hugged me and told me that I was a very "SPECIAL" child and I honestly believed it. I had so much confidence and was so proud to be the special child, that once the teasing started I was shocked. I remember a horrid girl at Corran (my Girls High School which I adored attending) told me..."Cover your legs up because they make me feel sick!" Silly girl had no idea that for years it would effect me and I hid my legs from everyone.

My first boyfriend made me feel so special again! He didn't care I had scars and he adored me just the way I was. He told me I was special and he loved me for it. C.B.H was the most incredible first love anyone girl could ask for and he has truly never been replaced.

Back to my hospital visit at 16. The genetic counsellor began to tell me about Pregnancy. Well my ears switched off and I assured them that I was never having children so don't even suggest it. I was going to travel the world, become and international singer and more famous than Michael Jackson. I didn't remember a single thing I was told and I left. Wrong time really to give out information about ones genetic condition, it is the time that every single teenager feels 'ten foot tall and bullet proof'.

In July 1996 I was living in London, having an incredible time, working in a pub and just adoring life in one of the biggest cities in the world. I wasn't eating properly, I was sleeping less than 5 hours a night and it was PARTY, PARTY, PARTY! Then one day I realised that my monthly period was a good 5 days late. I put it down to the amount of weight I had lost, but I went to 'Boots' Pharmacy anyway to get a Clear Blue Pregnancy test, (I wasn't a stupid girl, I thought I might be pregnant). Well I did the test and a faint grey line appeared in the 'Yep, your up the Duff' box. Well it said 'Clear Blue' and my line was a faint grey. I went back to Boots two more times to buy the tests, with the same results. I went to the Doctor the next day and produced my three faint grey lined tests. Her exact words were..."It doesn't matter what colour the line is in that box, it means you are pregnant". It turns out I was stupid girl after all.

I was pregnant, I was keeping my Baby and the Father was very excited. So then the questions at 3am in the mornings kept creeping back into my mind. Could I have a baby with EDS? Will I be well enough to have a baby with EDS? Would I bleed out and die? I made sure that I was under 'Hospital Care' and once I told the Midwife about my EDS she went to speak to a doctor. I thought it would be the blank faced questions about what EDS is again......but no......they knew about EDS, they had delivered babies from mothers with EDS, they had delivered babies who had EDS and you know what, all of the Doctors I dealt with said.......I'd be just fine, they would look after me and my baby.

In a Danish study they state....
· “Pregnancy is generally well-tolerated in women with Ehlers-Danlos Syndrome.... The problem is the worry that the mother will not be able to carry full term or of miscarriage".

Well I went full term, my baby was healthy and it was going to be a boy, which was just what I wanted!!!! I went into labour naturally when my water broke at 5am. I had 26 people throughout my Labour traipsing in and out of the delivery suite asking if they could have a look, a touch, a feel and by the end of my 17 hour labour I was oblivious to it. My mother was of course there for the whole 17 hours and was an amazing, amazing strength to me.

Tristan Lee Brewer arrived at 10.28pm on the 2 May 1996. He was 7 pounds, 15 oz. He had suffered from 'respiratory distress' and I was allowed a quick cuddle before he was taken to the ICU unit. My placenta chord broke unfortunately so then I needed to have that removed in an operating room. I was so happy my baby was here and he was healthy, I can't even remember the operation at all. I do remember one thing just before I was being wheeled away, I looked at the floor and there was a lot of blood. The next day my Mum would explain that I had haemorrhaged quite badly and the doctor at one point was a little bit worried. But in the end, it all turned out to be the most incredible moment of my life and I have never loved anyone or anything as much as my gorgeous son.

Here I am with my beautiful Mum and our gorgeous Tristan.

Love Rowena

x x x x

Life Expectancy???????

2009-01-30T15:31:00.003+13:00

EDS is a genetic condition and with this comes the expectancy of "How long am I going to last with this or when am I going to get my ticket off this planet?" Well it is a question I have never really wanted to know, especially with sayings like...."You have more chance of being killed by a terrorist than getting married after 35". Considering I am 37 and have yet to find my 'Prince Charming' those odds suck. However, when genetics play such a large roll in any ones life it is something to consider. EDS has many types, as I am sure you now know, but the good news for me is..........I have a completely normal life expectancy. YAHOOOO!!!!

In July 2006 I simply popped my neck back into place (as all Classic EDS have loose joints) and as I was rushing to make dinner for guests, I was very vigorous on the popping. I felt a strange 'whoosh' in the base of my head and within the hour my head felt very heavy. A couple of glasses of wine seemed to fix the dull pain and I went to bed. The next day I had a terrible headache and thought that perhaps I had a wee 'wine headache'. That night I went to bed and could not get comfortable. The pain in my head was heavy, and it felt like I was lying on concrete. Monday turned up right on time and I went off to school. I told my babies (my 5 year olds I taught) that Miss Brewer had a terrible headache today and made sure to remind them to talk in there very quiet inside voices. By 10am I started to have the on set of a migraine, I had blurred vision and my head felt like lead. I left my class and went to the sickbay for more panadol. I spoke to the Assistant Principal and she was convinced my neck was out and was going to ring for one of our Chiropractor parents. I said I had to go home and lye down, it was just a migraine and I was going to be fine. That night I was not fine and I called my Mum crying with the pain in my head. "Go to the Hospital now!" were her exact words. So I did. My boyfriend at the time took me. I was so moody and in so much pain in the base of my head.
At the hospital the Desk Nurse asked me out of 10, what was my pain like. I held my head as I was convinced at any moment it was going to fall off and said it was a definite 50 out of 10. I was ushered straight into A & E and the rest was a blur. I was given morphine and the amount of test I had was astronomical. The moment I said I have EDS the blank faces emerged and in my slurred, drugged speech, I told them to 'goggle' it. I had a spinal tap, many bloods taken every couple of hours, M.R.I's, absolutely e.v.e.r.y.t.h.i.n.g!!!! I was a little embarrassed in my drugged state as I thought, "What a lot of fuss over a headache, they better find something".

They certainly did, I had a 'left vertebral artery dissection', I had broken one of the main arteries in my head by putting my neck back into place too roughly. The heavy feeling in my head was blood congealing and it was so much more than just a headache. The scariest thing was, I had to then wait for 6 days in hospital to see if I was going to have a stroke. I was only 35 and I couldn't possibly have a stroke, worst of all the doctor told me if I had not come to the hospital where I was being pumped with blood thinners, I could have died.

The amazing thing is, is I didn't, I didn't have a stroke, I didn't have speech or gross motor skill problems, I was OK and after a few months of warfrain (prescribed blood thinner), 101 blood test (I looked like a heroin junkie with all my track marks), a few more months of Cartia (more blood thinners), I was fine! At my 1 year check with up Dr Singh, he was impressed and so was I. I had suffered no side affects what so ever.

Almost two years on, I don't put my neck back in anymore, and I am still 100% fine. It was a huge fright and I am careful now not to lift heavy things and when I am exercising I don't put any strain on my neck. I was really lucky and I know I was and that has helped me to become even more positive about my life. I don't 'sweat the small stuff', I don't spend quality time with people who bring me down, and I love the people even more that hold me in there hearts. There's nothing like a near death experiences to make you see rainbows where ever you go!

Love Rowena

x x x x

Stitches and Scars!

2009-01-29T14:22:00.007+13:00

Stitches are a big deal when you have Classic EDS. Here are my super model legs!!! Nice calves though I always thought. Now the scarring that occurs is called 'widened atrophic scars' or referred to as 'cigarette paper' scarring, as they are terribly thin and without using any imagination they look like crumpled cigarette papers. No hair grows back on the wide scars (which is great as there is less to shave) and they are so sensitive that I can tell someone is going to touch them without even looking. No tears over my scars though, as I wear them like a badge of honour. I have had over 300+ stitches in my life and my left knee has been split open 3 times.

Here are my knees a little closer. The skin is very stretchy and I can pull my knee skin away from the knee cap about 2 inches. It was amazing for 'party tricks' as a child but I don't tend to show me scars off at parties anymore!

Love Rowena

x x x x

Here are the Medical Characteristics of Classic EDS!

2009-01-28T17:52:00.005+13:00

The Classic Type:

Major diagnostic criteria
Hyperextensibility of the skin
Widened atrophic scars
Joint hypermobility
Can lead to osteoarthritis in the 3rd or 4th decade
Other features
Poor wound healing
½ of affected individuals are delivered up to 1 month premature due to premature rupture of fetal membranes
Some have cardiac abnormalities
Mitral valve prolapse
Aortic root dilation with occasional rupture
Scoliosis
Pes planus (flatfoot)
Molluscoid pseudotumors (calcified hematomas) may be associated with scars
Inheritance
Autosomal dominant single-gene disorder
Etiology
A major cause is mutations in type V collagen
At least 3 loci are involved
Biochemical Defects
Thickened collagen fibrils in skin as well as "cauliflower" deformities of collagen fibrils
Mutations in COL5A1 and COL5A2 have been seen in some families
No biochemical or molecular based testing methods have been devised to provide reliable results

Sounds very yucky really, however my case is classed as "mild" even though I have many of these characteristics.

Love Rowena

x x x x

In The Beginning!

2009-01-28T16:16:00.010+13:00

If my beautiful Mother had one thing to describe finally being pregnant with me, it was this...."I was beside myself". She had waited 7 years and I finally arrived. If only she knew the amount of hospital visits, doctor visits and worry I had in store for her.

You see it all come out in 'the wash' the day my mother took me to her regular plunket visit. The Plunket Nurse had said to my mother "It seems very strange that your child has these bruises". I had finger prints all over my small frame from just my mother picking me up for some love. She went on the tell my mother that she would need to discuss this with someone else. Well that someone else was Social Services and my mother again was 'beside herself', she still refers to it as "The Worst Day of Her Life!" They asked a myriad or questions and all my mother could say was "I waited 7 years to have her". You see I have 2 older sisters and obviously the lack of EDS in them meant they never had bruises, so they left satisfied with my mother crying. Mum then made a speedy doctors appointed.

Good old Dr Greenfield and I would become 'Kindred Spirits', but the day my mother took me to him was the start of many hospital visits. Dr Greenfield contacted Auckland Hospital and Dr Gluckman was to be the man who discovered what I had. He took one look at me and within a moment of pulling at my velveteen skin he told the nurse...."We've got one, don't tell anyone, we've got an Ehlerlos Danlos Syndrome in New Zealand!" I was the first one and I believe I appear in some dusty medical journals somewhere in a Medical Library in Auckland.

Well you can imagine my Mothers reactions, it wasn't of worry at this point, it was of great relief that she was not a 'child beater' and you guessed it, she marched back to the Plunket Rooms in Howick, waving the piece of paper of evidence, 'SHE DID NOT HURT HER BABY'. Then the truth sunk in, no ones life was going to be straight forward anymore.

37 years ago there was hardly any medical knowledge of EDS but this is not the case today. However, saying that still doesn't prepare myself or my gorgeous son the freedom to have an accident, go see a doctor, say my EDS speel and for every single doctor to stare back at me with the "What the hell are you talking about" face. Once you begin to explain it, they will then use the "Yes it looks like I am listening to you...but I'm not".

I really wanted to start this Blog just to say that "I am here"! I am living EDS everyday, I have Classic EDS (Type 2) and it is not all 'doom and gloom' like you see on 'youtube'! It's okay living with EDS, it can be painful, annoying and just a pain, but I don't know anything different, so this is my life and it's a lovely one!

Love Rowena

x x x x