Beta Thalassemia

There is a negative stigma around people who are too sick to work, who stay at home and collect a disability check from the government. There is also a negative stigma around people who work a full time job, but have to take off work frequently for doctor appointments, treatment days and sick days. So, [...]

Few things tug at our heartstrings more than sick kids. Turn on any cable channel after 7 p.m. and you’re likely to see at least one fundraising commercial featuring a doe-eyed child laying in a hospital bed.  These images stir our emotions and catalyze feelings that range from sympathy to guilt. We watch the TV [...]

“…You have a mass in your heart — most likely a cancerous tumor — and we will need to do open heart surgery. I am away for two weeks starting tomorrow, so call and make an appointment to see me when I get back from vacation.” This was a message left on my voicemail at [...]

Transitions are rough for every young adult, but add in a chronic illness to the mix and it’s a whole different ball game. I was fresh out of college, top of my class, with many opportunities ahead of me: three job offers in different cities, the possibility of grad school, and so much more. I had all [...]

A ball and chain is a device made out of iron that’s so heavy it was once used on the ankles of prisoners to prevent their escape from jail. If I were to describe the energetic experience of being a patient in the American medical system, I would say it feels like each of my [...]

Depression. Anxiety. Sadness. They’re often the unwelcome, but lifelong friends when you have a rare disease. Sometimes it can come in phases, and sometimes it settles in and becomes part of your everyday. But we don’t seem to address it much. Without a doubt, there’s a double stigma – to live with a rare condition [...]

Dear beta thalassemia major, You thought you stole my life when I was 6 months old. You must have been so happy when I was diagnosed as a baby, thinking you could control me from here on out. But I have a question for you. Why me? Why did you, a genetic condition, choose me, [...]