17 February 2011

wanna see what my dodgy collagen looks like?


well this is whats causing all my problems, well not all. i received my testing results back. pretty sure its type 3, yet they are continuing to test for a year for the final results.

8 comments:

Nechtan said...

Hi Em,

Quite fascinating in a way. I hope its something that can be treated or worked around. Another year of testing though is a bit much.

I really hope you enjoy your afternoon tea next week and look forward to seeing the pics. A little glass of champers will hopefully be OK.

All the best

Nechtan

magic said...

wow thats amazing. I didnt know they had a test for type 3. x

Em said...

hi nechtan

they can treat the symptoms nechtan, the same with pots.

i hope im brave enough to take some pictures, i shall challege myself. even if its of the pretty little cakes.x

Em said...

hi magic

really is intriguing looking at the way the skin is damaged. wonky collagen and all. i did think that if i took collagen tablets that would replace/build up the defected stuff. apparently that isnt the case. it grows wonky and stays wonky!!!

in the letter he prof p suggests that i have hypermobility type, assuming thats type 3, and so hes continuing the test onto the protein level, whatever that means.

when you had your skin biopsy did you find you three little holes knitting back together ok? mine are still red and itchy and i wondered if that was normal after all this time?x

Zen said...

That's very interesting Em. Are those black fuzzy bits the damage?
I'm so glad the doctors are figuring everything out properly *HUGS*

Achelois said...

wow em. I must admit I am confused on all the testing. I had thought there was a skin bioposy for Ehlers Danlos Vascular Type and that although the results took some little while not a year and that as yet Hypermobility Type was not able to be diagnosed via 'tests' of this nature. I must be very behind on the latest criteria I think!

A cousin of mine has recently been diagnosed by Professor G and not been offered this type of testing. It makes me wonder what makes him decide who to bioposy or not, proteins etc. (I do remember you having relations who sadly passed away suddenly when young so understand this may be an influencing factor with regard to bioposy for Vascular Type)

He definitely diagnosed both my daughter and myself with Ehlers Danlos hypermobility type (formerly k/a Type III) I have crossovers to Vascular Type but I haven't seen him for many years now. My daughter now gets to see him once a year. Neither of us were offered a bioposy.I hope that eventually the testing is worthwile.

I also really hope you enjoy the forthcoming tea and a taste of champagne? Have you decided whether to partake or not yet Em?

Em said...

hi zen

i assume its the manky bits of my collagen!!!

its very interesting to see, in black and white so to speak.xxx

Em said...

hi achelois

was a bit confused myself but that sums me up!!!!

i got back in touch with prof g last year by email, i noted that i had family members (you are correct) that had passed away suddenly. also that i have vascular sympathetic faliure, (found that out with the autonomic function test) so he said it would be wise to be tested. only consultants can refer you to prof p, my pots dr at Kings College who is oh so helpful referred me.

prof p took the skin off me, said the first round would take six weeks, four months later i got this in the post. he then said that the final round would take a year, due to waiting times. i think because its so costly unless you ask have a good reason to get tested they wont, unfortunately. im so lucky that ive have because fingers crossed they will rule out the other types. thats how i think they came to the conclusion that i have type 3.

thursday in on, as long as health prevails. hoping i will be brave enough to take some pictures.

hope you and your daughter are ok.x