Real Stories of Women Living with Bleeding Disorders – Candace
Candace was a healthy 27-year-old who worked 60 hours a week and had an active social life on the weekends. She had no previous medical issues, so she wasn’t particularly concerned when she started getting large, colorful bruises on her body. At the urging of her family members, she went to see a doctor to have them looked at. “[My doctor] took one look at me and said, ‘This is a job for a hematologist, but let me draw your blood and let’s see what happens.’”
While Candace was at work the next day, her doctor left her a message saying, “Candace, this is your doctor. Your platelets are at 7,0001. You need to get to the emergency room right now or you’re going to die.” The timing of this voicemail could not have been luckier for Candace because she had an accident earlier that same day. “I had actually smashed the back of my head on the wheel well of a 26-foot box truck that had come in earlier. That should have killed me but for some miraculous reason, I didn’t have a brain bleed. It dumbfounded doctors. I was very fortunate.”
She spent a whirlwind 6 days in the hospital for treatment to raise her platelet count (platelets are blood cells that help the blood form clots). She had to ask a nurse to write down details of her condition because she couldn’t remember it. Candace was diagnosed with immune thrombocytopenia, or ITP for short. ITP is a condition in which the body contains low levels of platelets, the blood cells that help prevent bleeding. She had heard of bleeding disorders like hemophilia and von Willebrand disease before this, but to her knowledge, no one in her family had a bleeding disorder or even had symptoms like hers. “It never really impacted my life directly, so when I was diagnosed, it was sort of a baptism-by-fire situation. All of a sudden, I got kind of tossed into this world of bleeding disorders, rare diseases, and rare conditions. There is a real need for treatments, therapies, and research to help us be able to have a higher quality of life.”
When she got out of the hospital, Candace found a specialist and went through 6 months of testing to confirm that she had chronic (recurring) low platelets. The doctor offered several treatment options, one of which was Rituxan®, a treatment that is typically used with chemotherapy for patients with blood cancers and arthritis. Her friends and family had concerns about this treatment, but Candace did her research and decided to do it. After 1 month of infusions (injecting medicine into a vein), her doctor informed her that her platelet counts had returned to normal. She felt extremely lucky.
The whole experience inspired Candace to make a career change and dedicate her work to helping herself and others with bleeding disorders. “I decided corporate America was not going to work anymore so I went to law school to become an attorney. I graduated early from law school, took the bar exam, and was in a rush because I knew my ITP could come back. And the next year, in 2019, it did.” By this time, her former doctor had retired and the next doctor she saw did not want to prescribe Rituxan®, so she kept searching and finally found a doctor who would. Candace also had to work with her insurance carrier to have her treatment covered, even speaking to the head nurse of the insurance company to teach her about ITP and have the diagnosis code for this disorder added to the system. She underwent the treatment again in July 2019, and has not had symptoms of ITP since.
Candace is an active member of the bleeding disorders community. She is part of the Hemophilia Federation of America’s community-based research network and has been a peer mentor for other women with bleeding disorders. She will talk to anyone about ITP, and that includes members of congress, pharmaceutical companies, market researchers, and research conference attendees. “I try to help with all types of research, data collection, whatever type of patient services are out there to help my community improve their quality of life and hopefully drive more research and treatments for ITP.” She also has a blog where she writes about her experiences with ITP and the work she’s doing in the community.
Although she no longer has a low platelet count, her platelets are still “dysfunctional,” so if she gets a cut or nosebleed, she bleeds longer than normal. She carries bandages, gauze, and antibacterial cream everywhere she goes, and jokes that she’s a “walking first-aid kit.” She has to be mindful of furniture when in new environments because even small bumps can produce large bruises. She uses an app called Florio ITP to track things like her platelet counts and log events like nosebleeds and bruises.
Candace offers the following advice for people with ITP and other bleeding disorders: “You have to be a team with your doctors, and it has to be a community effort. It’s not just working with a hematologist, but with all your physicians. You are the center spoke of the wheel and every spoke needs to be strong. If you are not happy with a doctor, find another one because that’s going to be critical to living your best life with a bleeding disorder. I have not shied away from finding new doctors when I don’t feel like I’m getting the best care possible, and that has made all the difference. The only reason I’m here today and doing as well as I am is because I’ve had some really great physicians that… were shoulder to shoulder with me as I try to figure out how to live with ITP.”
CDC thanks Candace for sharing her story.
If you would like to share your personal story, please contact us at Contact CDC-INFO
1 For adults, a normal platelet count is between 150,000-450,000 per microliter of blood.