Hannah's story: Living with Beta Thalassemia

21-year-old Hannah Husom is like many college students: she goes to class, works, and enjoys spending time with her family and boyfriend.

Unlike most, however, she has a rare blood disorder that requires monthly red cell transfusions.

Hannah’s mom noticed that she was jaundiced at birth; her mother’s intuition told her something was wrong. Though most newborns have some yellowing of the skin, Hannah’s didn’t go away. She was always tired, and had a very low blood count.

Doctors thought it might be hepatitis or leukemia, and it wasn’t until she was seven that a new doctor at Group Health finally diagnosed her with Beta thalassemia major, a genetic blood disorder that impacts the body’s ability to produce hemoglobin, the protein that carries oxygen, resulting in anemia.

“It’s constantly being tired all the time. I can sleep for 11 hours and still be tired the next day, and then take a nap, and then be ready for bed 2 hours later.”

She received her first blood transfusion when she was fifteen, and has been receiving them every four weeks at Seattle Children’s since then – she estimates that she’s received 100.

The transfusions of A+ blood make her feel better immediately.

“It’s basically like taking a nap for a week. I have a lot more energy, and my moods start to get better. I feel more positive without even trying. My body temperature gets a little higher – I can almost start to feel it working immediately. My coworkers ask if I’ve been tanning the day before!”

Beta thalassemia occurs most frequently in people with Mediterranean, North African, Middle Eastern, Indian, Central Asian, and Southeast Asian heritage. Because it’s a recessive genetic trait, both parents need to be carriers. Frequent blood transfusions can put patients at risk of organ-damaging levels of iron in their blood, and many become sensitized to antigens in donor blood because of the many transfusions they receive. A stem cell transplant is the only cure.

Hannah’s condition is so rare that she doesn’t know anyone else who has it, and most people she talks to have never heard of it.

“I want to get the word out. A lot of people brush it off. It’s not cancer, so it’s not interesting to them. I want to have a conversation without it being uncomfortable.”

Hannah is very grateful for the blood donors who allow her to live a normal life: she’s studying at Everest college in Everett to become a medical assistant, and can’t wait to be in the field to help others like she’s been helped.

“I wouldn’t be here today if it weren’t for your many donors, and I will always be grateful for those who continuously donate their blood.”

Everest is hosting a blood drive on October 27, and Hannah would love to see everyone who is eligible donate.

Want to help patients in our community like Hannah? Schedule your next blood donation.