Saturday, January 31, 2009

EDS and Pregnancy!

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

Friday, January 30, 2009

Life Expectancy???????

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

Thursday, January 29, 2009

Stitches and Scars!

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

Wednesday, January 28, 2009

Here are the Medical Characteristics of Classic EDS!

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
Pes planus (flatfoot)
Molluscoid pseudotumors (calcified hematomas) may be associated with scars
Autosomal dominant single-gene disorder
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!

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