Priyanka Kumar was diagnosed with beta-thalassemia major when she was a few months old. Beta-thalassemia major is a condition which is caused by reduced or no production of β-globin, a component of an oxygen-carrying protein called hemoglobin, which is found in red blood cells. Because healthy red blood cells are not formed, β-thalassemia can eventually lead to anemia, fatigue and other issues, as it impacts the delivery of oxygen in an individual’s blood cells and individuals need frequent blood transfusions. Now 26, she’s endured 13 surgeries, countless infections, and hundreds of blood transfusions. But she doesn’t let it dim her spirits. In fact, she takes strength from her condition and uses it to give back to the community. Recently, she shared what life is like for her:

What is it like living with transfusion-dependent beta-thalassemia?

It has its challenges. There are a lot of complications from having thalassemia. It causes iron overload in the body, so I already have this chronic illness, then I get another thing added on. It messes with a lot of things in my body and I feel like a lot of people don't understand thalassemia is not just a blood disorder.

What else comes with thalassemia for you?

Multiple things. Bone deficiency, for example. I'm very small. I weigh 100 pounds. I'm five foot two... It messes with my bone structure. I've had complications and needed multiple surgeries. I had a splenectomy. That was my first surgery at 10 years old. I don't have a spleen to fight infections, so I get sick faster when winter comes.

Wow. That is a lot to deal with. So, what’s a typical day like for you?

So, a typical day for me… today I woke up, went to work. I'm starting to feel a little achy because it's coming around time for my treatment [Priyanka receives a transfusion of three units of blood every three to four weeks]. I always know when it's time because I start getting achy. My body hurts, I get really bad back pain. Today is a typical day, so it's simple. On a worse day, tomorrow or later this week, I’ll wake up and be in excruciating pain with my lower back; it gets to the point where I hurt so much that I start feeling pain in my jaw and the back of my neck and my head and I just don't want to do anything. I'm just in pain.

On transfusion days, I'm tired and mellowed out and quiet; I don't really want to talk or be around people. I have to get my treatment and I just want to be left alone, just want to do my thing. Our nurse is really awesome and sometimes she’ll be able to place the IV access for my transfusion on the first poke and get my IV going, but then sometimes my veins just don't want to work and it takes three to six tries until the IV gets started. Nobody likes to get poked like a rag doll, so that's a really miserable day.

What’s it like right after the transfusion?

I'm energized, I feel like I can go do a hundred and one things. I'm pumped up and it's great. It's great once I get my blood.

How has dealing with thalassemia changed for you over the years? Has there been a change?

Yeah, it's changed dramatically. I was born in 1994. Back then, thalassemia was unheard of for my family. I was this little baby that didn't really eat, didn't sleep, so for my parents it was just like, “Oh my gosh, what's going on?” And next thing I know, I'm being air-lifted and a doctor is diagnosing me with beta-thalassemia. 

When I moved to Michigan, my doctor specialized in cancer. I was their only thalassemia patient. She managed the best she could, but I should've had a doctor who specialized. I missed out on so much. 

But I'm thankful how much everything has changed. I no longer have to be put on a pump five days a week for iron chelation. Now I take pills, iron chelate, and monitor it. Now, I’m hearing, “Okay, this is what needs to be done. You need this test, so go here. We need to know what your iron levels are and get an MRI of the liver and your heart and see what's going on.”

Who is in your support community?

My parents are very supportive. My mom especially. She's been there for everything. Every surgery. Every appointment. When I turned 18, I was like, “Okay, I want to do this by myself. I need to learn because mom and dad aren't going to be here forever,” but I think my mom has always been my biggest supporter.

I also have supportive friends. In school, I'd always been upfront with my teachers and peers because I would miss school. I would get hospitalized and be out for five, 10 or 13 days and people start to wonder. “Where is she?” And my boyfriend. He's always helpful, he tries to be very understanding, especially when I'm drained and I'm ready to be snappy.

What is the thal community like for you? How did you get involved?

When I was hitting my teenage years, I was non-compliant. I wasn’t taking my medicine. I didn't want to listen. I didn't care what the doctors had to say. I was just so over it all. My doctor said, “You need to talk to a counselor. I feel like you handle this in not the most positive way.” So, I started seeing a social worker and she suggested we look into TIF, the Thalassemia International Federation. At that time, there wasn't really much there for patients. So, I did my own research and was just searching online and Cooley's Anemia Foundation (CAF) popped up. I clicked “Get connected,” or something, and I got a message back saying something like, “We would love to talk to you. We would love to sponsor you to come to a conference.” I ended up going to their conference in Chicago that summer and I... I mean, I was very shy. I didn't know anybody. I was not out of my shell and I was by myself. But I listened. And a lot of stories would connect or match up, like this person had this procedure done or this person went through this experience and I was just like, “Okay, holy cow. I'm not the only one that goes through this or feels this way.” As time went on, I reached out to a social worker at CAF and I just told her, “Hey. This is my story. I want to get connected.”

Now I lead a patient group with CAF. There are a few women who are my age. We talk about what's going on in the world. We talk about little life ideas, how we're all doing. We pick a topic, and I, along with another patient, run it with that original social worker I reached out to. So, we brainstorm ideas, play a game… make it fun.