What It’s Like To Live With ITP: Joan’s Story
When Joan learned she had immune thrombocytopenia one and a half years ago, she was skeptical of the diagnosis. It started with nosebleeds that wouldn’t go away and a lot of bruising. However, Joan had a long career as a nurse, so she knew what platelet counts should be and that hers were dangerously low since she had 4 other autoimmune diseases as well. Joan understood it was the result of her immune system ‘turning on’ her platelets and destroying them at the same time.
Joan also realized quickly that she wasn’t having the relationship she wanted with her hematologist. The first sign was when she called the office, after her blood work revealed a dangerously low platelet count below 8,000, and the doctor didn’t get back to her for three days. She looked for another doctor immediately, and was able to find another hematologist at the same hospital. As a result, Joan advises to act in a similar manner, if you are not satisfied with your relationship with your current doctor. Moreover, she recommends finding a doctor who can communicate, is compassionate and understanding, and speaks to the science.
What does Joan worry about?
‘Mostly about Covid-19’, she said. Joan has to go to the hospital every week for an injection of her current medication, and therefore worries about exposure to the virus. On the other hand, going weekly for injections relieves her anxiety of whether her platelets are falling dangerously low. In general, she tries not to worry too much and enjoys life. She doesn’t let her ITP stop her from going on the vacation trips she loves, or keep her from spending time with her children and grandchildren.
Nevertheless, this means she has to be cautious, and take care of herself. Joan recognizes the potential triggers for her platelets to drop. One of the main causes is stress, which may be higher during the holiday season due to all the preparations, events, and traveling.
Joan’s advice
Do a lot of reading! Learn as much as you can, as learning helps you feel better. Here is a list of some resources that are helpful to her:
Facebook groups on ITP;
Platelet Disorder Support Association (PDSA) – an ITP patient organization that has very good information and resources;
Clinical trials on the FDA websites, as she is always interested in the possibility of discovering something new that might help her or someone else in the future;
Don’t take to your bed, keep living your life
Count your blessings and move on
There’s no rhyme or reason for your platelets to go up and down and you need to go with the flow
Find a hematologist you can trust
