What It’s Like To Live With ITP: Laura’s Story
Laura found out she had immune thrombocytopenia after random blood work revealed her platelet count was very low. Suffering also from MS, she learned that, although there isn’t always a solution, helping others living with an illness makes her feels better.
Laura shares with the rare community that different doctors look at platelet levels differently. She recalls how a hematologist she saw would not treat her unless her platelets were below 30,000. On the other hand, her neurologist wanted to treat her right away with IVIg for her MS. After starting this treatment, Laura’s platelet count went even lower.
Laura’s day-to-day life and advice
While living with ITP, Laura has been experiencing fatigue that’s “off the charts.” She is currently in a wheelchair because of her MS, and gets in-home Physical Therapy or goes online for MS gym programs. Laura keeps a diary of symptoms, so she can see any patterns that may arise and share them with her doctor.
Additionally, Laura visits ITP Facebook groups, but is put off by a lot of the complaining and despair. The attitude she adopts is “to take everything with a grain of salt.” She advises “to accept that you can only do so much– yet, you don’t want to always be afraid to do something.”
Laura also spends a lot of time reading and learning about ITP. Her goal is to rely on herself and be knowledgeable enough to make sound decisions. She still has questions about the little things – like what is good to eat or not to eat for her platelet count or what kind of medication is safe to take for a headache.
Laura’s experience in joining a clinical study
Laura has participated in a clinical trial for MS, but not yet for ITP. “The study team treated me like a queen,” Laura recalls. “They were always interested in how I was feeling, and always listened to what I had to say.”
Laura heard about the clinical trial through her neurologist, who frequently communicates with her through email. After having seen seven other neurologists, what she likes best about her current neurologist is how he lets her know what’s new and asks her what’s going on. She appreciates that he cares and openly speaks with her.
