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
Subscribe to:
Post Comments (Atom)
I am so glad I found this blog!!! I was beginning to think no-one in New Zealand ever had ED or hypermobility. I suspect my husband and 3 children have hypermobility syndrome at least if not Ehlers Danlos but our GP doesn't know enough to diagnose it. We are in Auckland - can you recommend a Doctor who knows how to test for it? My eldest son has recently been diagnosed with dyspraxia and it seems there are links between the two so I am keen to work out the puzzle. Thanks in advance if you can suggest who to see...
ReplyDeleteGood luck for your appointment next month. Fingers crossed that it is not type 4. And I hope your son's surgery goes really well. Thanks for sharing!!
Hi Midori,
ReplyDeleteThank you for your kind words. The best place to start, is to ring the Genetic Service on (09)307-4949 on ex: 25870. Talk to a lady called Cindy and she will book you and your family in to be tested. This will let you know for sure. Best of luck and let me know how you get on.
Rowena X
Thanks so much xxx
ReplyDeleteGosh, I wish I'd found this blog when I was still in NZ! I was in Chch and couldn't find any GP's who could help me figure out my hypermobility/prolapse/fatigue issues. We've recently moved to Canada so I'm starting over with GP's here, but at least over here there is no charge for the GP appointments. Still, it's really helpful to read other's accounts, and to know that in a few years, when we return to Godzone, there actually is help available.
ReplyDeleteThere is lots of help in NZ if you make sure that you make an appointment with Genetic Services at a hospital. I have only dealt with the Genetic Services in Auckland, but it would be worth a visit no matter where you live. Best of luck in Canada.
ReplyDeleteRowena XXXX