Patients’ stories


Winner Story #1 – International Thalassaemia Day 2019


There’s a certain uniqueness to raising a child with a genetic blood disorder that you didn’t know exists.  My parents learned this in May 1966 when offered the chance to back out of my adoption because of my thalassemia (then known as Bart’s hemoglobin).  Instead, they took me in and together we learned about thalassemia.  I was crossing bridges before I could walk. 

Sometimes my mother had to explain thalassemia to my pediatricians.  “Pay attention,” she’d tell me, “you’ll have to speak up for yourself because they don’t always believe me or care.” 

And she was right.

There was the General Practitioner who always prescribed iron despite my inability to take it.  I introduced him to a Hematologist known for strides in thalassemia research and treatment.  There was the nurse who intimated that only drug users would have veins as scarred as mine.  I introduced her to the world of tact, thalassemia, and transfusions.  And as for the Obstetrician who didn’t grasp the possible link between my HELLP Syndrome and thalassemia, consider him now acutely aware. 

And then along came the internet with more bridges to cross and new ones to build. 

I’ve availed myself for studies.  I’ve begged hospitals to better educate their staff about genetic blood disorders. I’ve shared with and learned from other thalassemia patients and feel less alone.  I cry foul on insurance companies who try limiting me to one transfusion per year which, as for many thalassemia patients, is like telling a stage 4 cancer patient to take one chemotherapy treatment this year and if they survive, have another next year.  I dare anyone to chastise me for a disorder that I neither chose or can control.

As I learned in November 2001 after my daughter’s birth, my efforts are not in vain (or vein.  Fellow thals will get it).  There’s a certain uniqueness to living with a genetic blood disorder while raising a child with the same illness.  It’s a lifelong process of learning to live with the illness, living in spite of it, then learning to live because of it.

My daughter, Connor, and I have Alpha Thalassemia with mine being hemoglobin H disease.  This means that three quarters of my hemoglobin chain are defective, my blood doesn’t oxygenate, and I need transfusions to live.  Connor has one deletion and doesn’t require transfusions.  Because of multiple transfusions, I’ve developed antibodies that kill the antigens when I’m transfused with my own blood type (A+) and since my body rejects universal donor blood, my transfusions are now a custom cross-match of A-blood with additives.   

And now I’m crossing another bridge: one built by thalassemia and blood donor awareness.  Transfusions are both humbling and a great equalizer because a donor’s race, religion, and lifestyle don’t matter.  What counts is that they’re humans helping other humans.   Thank you, all who give and learn so that I and countless others can live, see, be, and do. Together we can build the bridge to a cure.“



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