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
Tuesday, December 27, 2011
Wednesday, November 2, 2011
Dr. Diana is fantastic!
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
Tuesday, October 18, 2011
8 weeks for results!!!!!
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
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
Sunday, July 10, 2011
No more worrying for us!
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
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
Sunday, June 26, 2011
Scared, Frightenend and just Confused!
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
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
Monday, May 9, 2011
Tristan finally got his Surgery Appointment!
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
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
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