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