Anyone been diagnosed with CDA type 2 anemia or know someone who is?

Hey! My name is Abigail, I am from just outside of Memphis, Tennessee. I was diagnosed with CDA type 2 around age 8. I also have a brother who is 16 months older than me who was also diagnosed after I was, he however had none of the major complications that I did and never required any treatments. I began having breathing issues at 6 weeks old and thats when they noticed something was off. I was misdiagnosed for several years and once I was correctly diagnosed I began blood transfusions every 4 weeks for nearly 5 years. My body deposited extra bone in my skull from the overproduction of red blood cells so my vision and hearing were monitored very closely. I had my spleen and gallbladder both removed at age 18 and now 9 years later I have been stable and feeling well most of the time with occasional “flare- ups” here and there. I am happy to answer any questions you may have!

Hi Abigail,

Thank you so much for sharing your experience. I am amazed and happy that you have fought so bravely, and you are doing well. Hope your brother is doing well too. I would love to talk to you if possible. One specific question I have is - did your need for transfusion decrease or go away completely after the spleen was removed?
My brother was diagnosed with CDA type 2 anemia few months ago, he is requiring transfusion every 2 to 3 weeks since last December. We are evaluating splenectomy option and could use any and all information related to the condition and splenectomy.

Thank you Abigail, I look forward to hearing from you.

Madhuri

Absolutely, I am happy to share my experience. I have not had a single transplant since my splenectomy/ cholecystectomy nearly 10 years ago. My doctors wanted to remove my spleen from a very young age but my Mom wanted the decision to be mine so we waited until I was old enough to grasp what that meant. It also wasn’t causing too many issues other than occasional discomfort. I also wasn’t allowed to play any sports or participate in any activities that could lead to me being hit in the stomach as it could rupture my spleen and with the size that it was it would have caused catastrophic internal bleeding. It just so happened that right when I was old enough to make the decision myself I began having more pain and other issues so we went ahead and removed it.
Also, I wanted to add that while I was having transfusions my liver was taking on the extra iron which was causing damage, which could have affected my heart as well. They placed me on a medication to help prevent that and I had a severe allergic reaction to it, my body was covered in rashes for several months if not years.

It is very encouraging to hear Abigail that you have not needed transfusion for 10 years. My brother has iron overload as well and just started medication for it, let's see if it helps. He is older and is also diabetic in addition to liver issue like yours, that's why we are apprehensive since splenectomy is a major surgery. However, frequent blood transfusion is also extremely hard, so we were thinking even if splenectomy reduces the need for the transfusion, it might be worth it. We will consult the doctors and see what they advise. I had also heard of clinical trials for drugs like Sotatercept and lupatercept - did you come across any information related to it?
Thanks