-
Transitioning to adult care
What was your experience like as you moved from paediatric care to adult care? Was it smooth? What would you have changed?
-
3 Replies
-
I was an adult when I was diagnosed. 32y. There was pain but I did not know the source. During pregnancy was the most painful experiences. I believe having a knowledgable hematologist is crucial for care. It is my understanding from my doctors that Sickle Cell Disease is progressive. I will be 67y this year. My pain increased and now the Hydroxyurea is increased which has helped tremendously. I believe reading factual info is crucial to one’s health as one becomes older from teenage years and older. Unless a parent has the condition, identifying with that deep pain is difficult. A parent’s support though must be accepted and appreciated.
-
its really more hard to me more pain , more afraid , more medication, in recent years was better with respect to me, now its more hard and painful.
-
Oh wow Mrs Norris-Mulligan, 32?!
Yes, you’re right, having a knowledgable haematologist is essential.
I am so happy Hydroxyurea is helping you – it did wonders for me too!
Log in to reply.