Viewing 4 posts - 1 through 4 (of 4 total)
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  • #15727
    Tito Oye
    Keymaster

    What was your experience like as you moved from paediatric care to adult care? Was it smooth? What would you have changed?

    #15760

    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.

    #15772
    Kassem Banawer
    Participant

    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.

    #15775
    Tito Oye
    Keymaster

    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!

Viewing 4 posts - 1 through 4 (of 4 total)
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