Does anyone have any information regarding a blood disorder in adult DS? My wonderful and much loved sister is 43 and has a blood disorder which requires blood being removed whenever the red blood cell count goes high. Doctors have advised that this condition can lead to blood clots and stroke/heart attack if not monitored closely. My family don't know the name of the condition.
My sister lives in Ireland and my concern is that the treatment she is receiving seems less than satisfactory and unless my family really chase after the doctors for treatment, (i.e. request that blood tests be done regularly and arrange for her to have the blood removed when the count is high), there is no regular treatment programme, or any concern on the part of the doctors regarding the seriousness of her condition. I advocate that treatment for ALL patients be the best that is available. Unfortunately it appears that this is not always the case when the patient is considered outside the "normal" range of society.
I am going to Ireland next week and will be meeting with my sister's specialist and I need to have the answers to the following questions:
1. Does anyone know the name of this blood condition? (apparently it is quite common in DS)
2. Is there any treatment, other than removal of blood? e.g. blood thinners?
Any information would be greatly appreciated. Thank you!

In closing, I would like to say that my sister is the greatest gift our family has ever received and we love her dearly and want her with us for many, many, more years.