Leola Conley

In my opinion not. I am a parent of a 22 year old who has SS. I feel that there are just some things that time cannot heal.  You learn to adapt, accept, and get through it.  But in your friend’s case I am sure there  will always be some hurt that she/he  can no longer get a stem cell transplant. She or he were so looking forward to beginning a lif…[Read more]

No not at all.  I am the parent of a 21 year old with SS.  I love her more than anything as she is a joy to me, but life has always been stressful trying to work and make sure I was always there for her.  She is a college student now and I still worry about her health as she seems to down -play  the seriousness of her disease.

<p style=”text-align: left;”>Faith, I am the mother of a 21 year old daughter who has SS.  She is a senior in college.  I always pray for God to help everyone who has to deal with this disease.  There seems to be an upsurge in the development of new medicines recently.  My daughter has been put on Oxbryta just recently by her doctor. I am pra…[Read more]