When we first learned that Clark could have Aplastic anemia, we were completely naive on the disease and its effects. Here’s a simplified version of what we’ve learned so far.
What is it?
Aplastic anemia (a-PLAS-tik uh-NEE-me-uh) is a blood disorder in which the body’s bone marrow doesn’t make enough new blood cells. There are 3 types of new blood cells affected, red, white, and platelets.
Red blood cells carry oxygen to all parts of your body as well as carbon dioxide back to your lungs to be exhaled. White blood cells help your body fight infections. Platelets are blood cell fragments that stick together to seal small cuts or breaks on blood vessel walls and stop bleeding.
As your body stops producing these blood cells, there are many health problems that can occur. Heart failure, infections and spontaneous bleeding are some of the top issues. Gone untreated, severe Aplastic anemia will most certainly lead to an early death.
Aplastic anemia and Hemophilia are completely separate diseases, and have no commonality or causality. Clark has both diseases, unfortunately. Read this post to understand how the two relate, as well as differ.How do people get the disease?
People of all ages can develop Aplastic anemia. However, it’s most common in adolescents, young adults, and the elderly. Men and women are equally likely to have Aplastic anemia.
The disorder is two to three times more common in Asian countries.
Your risk of getting Aplastic anemia is higher if you:
- Have been exposed to toxins (such as Benzene)
- Have taken certain medicines or had radiation or chemotherapy
- Have certain infectious diseases, autoimmune disorders, or inherited conditions (such as Dyskeratosis congenita, DKC)
Is it curable?
Short answer is: yes, but the success rate is less than 100%.
How is it cured?
Treatments for Aplastic anemia include blood transfusions, blood and marrow stem cell transplants, and medicines. Blood transfusions help only temporarily. There are 3 ways to cure Aplastic anemia, in order of success rate:
- Bone Marrow Transfusion from a sibling (80% chance of success)
- Immunosuppressive Therapy (70% chance of success, if you don’t have DKC otherwise much less)
- Bone Marrow Transfusion from a stranger (varies, depending on the quality of the match)
When it comes to Clark, #1 will not work for us, as Connor is not a match. #2 will not work as it is suspected Clark has DKC. So we are left with only #3, and are in process of finding a match.
What is the likelihood of finding a bone marrow match from a stranger?
To make a bone marrow transplant successful, it requires that there is a genetic “match” between the donor and the recipient. Read more about the requirements for a bone marrow match here.
What is involved in a bone marrow transfusion procedure?
In short, it is a 1 year treatment, in which the recipients body is taken to a state of zero immunity for a period of 2 to 4 months, while the transplanted bone marrow starts to grow and “take root”. It is a complicated procedure with many risks. Read more about the procedure for getting a BMT.
Where can I learn more?
The National Heart, Lung and Blood institute is the best reference I’ve seen to date on Aplastic anemia. If you prefer to read offline, use this link to print all the topics at once.