Was a rare blood disease the cause of my earlier health issues?
A columnist ponders multiple health setbacks she faced decades ago
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Reflecting on my health history, I often wonder whether my past medical issues were early warning signs of a rare blood disorder or simply unrelated events.
Several chronic illnesses have shaped my life and daily experiences. As a child, I was diagnosed with lupus and Ehlers-Danlos syndrome (EDS). In adulthood, I received additional diagnoses: immune thrombocytopenia (ITP), thrombotic thrombocytopenic purpura, and atypical hemolytic uremic syndrome.
I was diagnosed with ITP in 2018 after experiencing extreme fatigue, unexplained bruising, and abnormal menstrual cycles. Fortunately, my diagnosis came quickly. Still, when I think back, I recall several previous medical emergencies and other issues that make me wonder if they were early flares of ITP.
Multiple issues with bleeding
During my first pregnancy in 2013, I suffered a devastating miscarriage that required a trip to the emergency room. I nearly bled to death and needed four blood transfusions — the first time I ever required transfusions.
During my next pregnancy in 2014, I was diagnosed with total placenta previa, a serious condition where the placenta settles too low and can block the birth canal, often leading to excessive bleeding during delivery. A vaginal birth was impossible, so a cesarean section was scheduled. Aside from a complication with the anesthesia, my son’s delivery went smoothly. However, within eight hours, my condition began to deteriorate rapidly.
During a shift change, my new nurse sensed something was wrong and decided to check on me. (After an epidural and spinal tap, patients usually remain in bed with a catheter until full sensation returns.) When she pulled back the sheets, I saw the color drain from her face — I’d bled through the entire mattress. She immediately sounded the alarm, called for help, and contacted my doctor. Once again, I was on the brink of bleeding to death.
Another possible ITP-related episode occurred during my next pregnancy in 2015, around five months along. While washing dishes, I suddenly began to bleed profusely — so much that blood ran down my leg and filled my sock and slipper. I was certain I had lost the baby and was reliving the trauma of 2013. But at the ER and during a follow-up the next day, ultrasounds showed the baby was fine, and no cause was found. Doctors suggested a random ruptured hematoma.
Any of these episodes could have been related to ITP — I may have had low platelets each time. However, platelet issues weren’t on anyone’s radar. I was anemic, so low blood counts were expected, especially after significant blood loss. Each time, there appeared to be a clear explanation — miscarriage, placenta previa, or a possible hematoma — so no one looked further.
On top of all this, I suffered from debilitating menstrual cycles since the age of 9, so severe that I missed school as a child and then work as an adult. Doctors always said it was because I started so early, and had lupus and EDS, so they never looked further into it. I just began skipping cycles by using single-level hormone birth control pills.
Had my body been sounding the alarm for years? Was I struggling with a rare blood disease long before I was diagnosed? Was it overlooked because of all the other things that were happening? Sadly, I’ll probably never know. Retrieving medical records from decades ago would be a daunting task. Still, it’s something I often ponder, adding another layer to my complex and challenging medical story.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.Â
