This isn't a question so much as it is a discussion topic?
Thalassemia has two different classifications - alpha and beta.
I fall under Alpha thalassemia because I have Hemoglobin H Disease, which is a deletion of 3 alpha chains, and I have no idea whatsoever where I 'fit in' in regards to thalassemia discussions.
I've been looking for thalassemia communities for quite some time now and I've come to realize that most of the communities tend to focus on beta thalassemia, which makes sense because of the Thalassemia Major, but at the same time, I'm wondering, "What about those of us who have alpha thalassemia?"
Minor alpha thals can fit in with the minor thal discussions, but where does Hemoglobin H fit in?
Regardless if you have alpha or beta, you have thalassemia, so when I visit thalassemia communities, I expect to see a mix of both alpha and beta thalassemia patients and yet I mostly see those with beta thalassemia.
Surely I'm not the only one with Hemoglobin H, which is an intermediate form of alpha thalassemia and is similar in a lot of ways to what people call thalassemia intermedia?