Thalassemia Family & SPT on Clubhouse

Description

This is a place for Thalassemia patients and families and friends to connect and find support, hold space for one another. Remember kindness is everything and we will not tolerate any hatred, racism, sexism, or homophobia, etc. We are all going through this journey together! Welcome to the family because when you’re here you’re a Thal Pal and Thal Pal means family!

Thalassemia is a blood disorder involving less than normal amounts of an oxygen-carrying protein.

Thalassemia is an inherited blood disorder characterized by less oxygen-carrying protein (hemoglobin) and fewer red blood cells in the body than normal.

Thalassemia can cause anemia, leaving you fatigued.

In short Thalassemia simply means the haver doesn’t make their own blood. Mild forms may not need treatment. Severe forms may require blood transfusions or a donor stem-cell transplant.

Alpha-thalassemia
Four genes are involved in making the alpha hemoglobin chain. You get two from each of your parents. If you inherit:
* One mutated gene, you'll have no signs or symptoms of thalassemia. But you are a carrier of the disease and can pass it on to your children.
* Two mutated genes, your thalassemia signs and symptoms will be mild. This condition might be called alpha-thalassemia trait.
* Three mutated genes, your signs and symptoms will be moderate to severe.
Inheriting four mutated genes is rare and usually results in stillbirth. Babies born with this condition often die shortly after birth or require lifelong transfusion therapy. In rare cases, a child born with this condition can be treated with transfusions and a stem cell transplant.

Beta-thalassemia
Two genes are involved in making the beta hemoglobin chain. You get one from each of your parents. If you inherit:
* One mutated gene, you'll have mild signs and symptoms. This condition is called thalassemia minor or beta-thalassemia.
* Two mutated genes, your signs and symptoms will be moderate to severe. This condition is called thalassemia major, or Cooley anemia.
Babies born with two defective beta hemoglobin genes usually are healthy at birth but develop signs and symptoms within the first two years of life. A milder form, called thalassemia intermedia, also can result from two mutated genes.

No hate of any kind: We are all different no hate of any kind this includes but is not limited to homophobia, racism, sexism, body shamming!
Support one another : We may all be the same in ways but have different journeys, please support one another!
We are not an organization : We are simply a group of individuals who share a common thread we are not an organization we can not supply anyone with items such as medical supplies or medications!