Hi people,
I see I'm not alone. I was diagnosted 1 year ago- I couldn't believe. I'm still praying to wake up and to see tahtw as just a dream...
I'm a singer, and just starting my career, and I found that in last years it was not acne- but all my life I had SM.
I have litle son- I'm so scared when he has anything on his fase or neck...
May be he 'll be one of us with Sm- how peety for my sweet 3 y old son.
When I was diagnosted- I was crying 3 days non stop- what 'll happens with my life of music star? Now I'm ready to go to doctor again and to talk for operation - here it coasts about 400 Euro ( I'm from east Europe).
Is there anybody- WHO 'll carry for us? Why people are scare of AIDS, but not of SM?
Why nobody is searching for medicaments?What 'll happens if all the populatins has Keratin 17 mutated?
I cannot imagine.
Why it is so expensive to have any knowledge about our desease?
I'm disapointed of all my life. For me it is better to be death, than to have SM beacuse of my profession.
People- who 'll do an international organisation of the people with SM?
It can't be true...
I'm praying every day to have good news some day- even after 10 years.
I want it for my nice and clever son, for all small children, who 'll be with Keratin 17 mutated, but they still don't know it till 13 years.....
Oh God help us.