I'm sorry it took you so long to find out.
I found out in my 30's. I was also thrilled to find out what it was that I had. To be able to put a name with it finally.
I hope this lightens your mind.
No you are not alone!!
Take Care
I discovered that what I had was PS last year my 21 years. We are not alone, strength!
Take care.
I undersatand, as far as anyone can understand another, as I too have PS. It affects my left hand & chest/ breast/ ribs. It was hard growing up different but I can't say it has ruined my life. I am married with children & grand children & had a career & friends. I can drive, cook, clean, garden & look after pets & children - everything really important. I thought I was alone until I was 50 & saw it on the internet. No Dr or surgeon had ever told me a diagnosis. The only way to cope is to look on the bright side really. I'm 66 now & in reasonable health. Luckier than many..
Thank you all so much for your kind words. This year of knowing has changed me for the better. Its taken a while but I have just started to talk freely about it and maybe one day I'll strip off and have that fake tan i have always fancied trying.
Whew. I just figured it out T O D A Y !! And I am 65 years old. So happy to see where I fit in. The last puzzle piece.