My name is Evelyn Grimberg, 29 years, and I have been living in Nijmegen, the Netherlands, for more than 10 years. I was born with Glanzmann’s thrombasthenia, a hereditary blood platelets defect.
At birth everything seemed normal, until I, as a three months old baby, got a bad cold. The family doctor prescribed a mucus solvent, which resulted in an unstoppable severe nosebleed. We were referred to the local hospital. While taking blood, they noticed I got bruises from the tourniquet. This led to further examination in the Radboud University Medical Center in Nijmegen. There they soon found out I have the very rare blood clotting disorder, Glanzmann’s thrombasthenia.
The nosebleed showed that something small can have a big impact. There was no history of Glanzmann’s disease in my family, so my parents were totally surprised by all this. My parents approached other patients/parents of patients, to get a better impression of what to expect. A working group was started, which, after a few years, was admitted into the Dutch Hemophilia Society NVHP. Meanwhile this working group is no longer limited to people with Glanzmann’s disease, but there to protect the interests of people with all ultra rare blood clotting disorders. My parents did a wonderful job raising me. They treated me as much as possible in an identical way to my sisters, and tried not to see limitations. On top of that, they taught me to be open about my blood clotting disorder.
During my adolescent years, I was often confronted with the consequences of my blood clotting disorder. Menstruations were hard to control. During the phase you’re supposed to develop into an individual, become self-reliant and start exploring the world, my life was determined by Glanzmann’s disease. Sometimes I spent more time in hospital than in high school. It was a difficult phase, during which I came to realize what impact Glanzmann’s disease has on my life, and what consequences a bleed can have. Luckily, I’ve been doing well for a number of years now. The bleeds are more or less under control. The challenges I face the most now, are the bruises. To me they’re normal, but outsiders often think I’m physically abused. This happens every day in the summertime. On top of that, I have to deal on a daily basis with the consequences of bleeds in my abdomen and genitals. Because of the bleeds, I have many abdominal adhesions, which lead to abdominal pain. Will I be able to have children? Only time will tell.
I’ve been active within the Dutch Hemophilia Society NVHP. I get a lot of energy out of dealing with my disorder in a positive way, and being there for others. I’ve had the privilege to visit various international congresses and share my experiences at presentations. I realize, that we in the Netherlands are lucky to have the health care and possibilities we have. Had I lived elsewhere, my life would possibly not have been as easy, or I might even have died from a bleed.
By participating in ‘blood relatives’, I hope to show others what it’s like to live with a rare blood clotting disorder, and especially shed some light on the female perspective.