Women fight rare blood disease

National Women’s Health Week is a time to empower women to make their health a priority as well as encourage them to take steps to improve their overall health. It’s also an opportunity to raise awareness of rare diseases that disproportionately affect women.

One rare blood disease called immune thrombocytopenia, or ITP, is when the body’s immune system mistakenly attacks a person’s healthy blood cells called platelets. People of any gender can have ITP, but it’s twice as common in women than in men.

Without enough platelets to clot blood and protect your blood vessels you can be at risk for ITP, which may present itself as excessive bleeding, frequent bruising, spots on the skin, or even a serious bleed in your brain or other vital organs. In addition to visible symptoms you may be feeling fatigued, which can make it difficult to function. If you do have ITP, it’s important to monitor platelet counts on an ongoing basis to ensure that your platelets are at a safe level.

Diagnosis of ITP is difficult and often involves a process of elimination. Before ITP can be diagnosed as the cause of low platelets, other conditions have to be ruled out.

That’s what happened to Krystal, a working mom with a husband in the military. Doctors kept exploring different potential diseases while attempting to get her platelets to an appropriate level.

“Doctors thought I had anemia, then leukemia, and then different autoimmune disorders before I finally got diagnosed with ITP. At first, all I did was focus on my platelet counts. But I also needed to focus on my life as a working mom with twins and a husband who was deployed in Afghanistan. Now, I’ve learned not to let platelet counts rule my life anymore.”

Even though ITP can be a lifelong disease, it is manageable with treatment. It’s important to work with your doctor to find the treatment that works best for you.

Here are some tips to conveniently help track and manage your ITP:

* Communicate: Because you may not always show obvious signs of illness, like bruising, your family and friends may not fully realize the impact that ITP has on your life. This may make it hard to get the support you need. Sharing your experience and talking about how you feel may help loved ones better understand your life with ITP.

* Stay informed: Review the best practices for managing autoimmune diseases and keep abreast of emerging treatment options. Check medical information about your disease and ways you can keep yourself healthy.

* Participate: Attend local meetings and activities with other ITP patients. PDSA.org and its local chapters are a great way to connect with them.

For more information and to hear others talk about ITP, visit MyITPLife.