Recently, I went to a Sickle Cell user group meeting. I had never been to one and so did not know what to expect; well it was well attended by SCD patients, their partners, mothers, (a few mothers on behalf of their children); a variable mix. There were about six medical staff (hematology consultants, psychology doctor, critical nurse specialist, head of hematology). A good balance of them versus us.
Now the reason why I am writing about my experience is because of my interaction with other people there. There was a lot of talk about: SCD and psychology; new drugs in their testing stages and therapies available, like gene therapy and the most interesting one was about self-management.
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