Meeting others who have paroxysmal nocturnal hemoglobinuria (PNH) helped Brandi Lewis feel less alone. “Connection when living with PNH is the most important thing,” she said. Because PNH is a rare disease, it can be hard to find others who are living with the same condition. In the United States, an estimated 12 or 13 out of every 1 million people have PNH.

PNH causes your red blood cells to break apart earlier than they should, so you don’t have enough of these cells in your blood. This happens because the protective shield on red blood cells is missing, making them vulnerable to attack by your body’s immune system. The condition gets the name “paroxysmal nocturnal hemoglobinuria” from one possible symptom — dark-colored urine, which can appear in the morning. Other potential symptoms include pain, breathing difficulties, and fatigue.

“My community understood what I was going through.”

— Brandi, a myPNHteam member

If PNH isn’t treated, it can lead to complications (medical problems that happen during a disease). These conditions may include kidney disease, blood clots, and hemolytic anemia, which occurs when your body can’t replace destroyed red blood cells fast enough.

Brandi was only 26 when she was diagnosed with PNH. Although this condition can affect anyone of any age, people who have PNH often receive the diagnosis in their 30s.

The diagnosis “really rocked my world,” Brandi reflected. During that early period, she felt as though she was the only person facing this illness. Brandi worked hard to meet others diagnosed with PNH. She attended conferences and joined various online support groups, including myPNHteam.

These connections showed Brandi how to navigate life with PNH. “Without those people, I wouldn’t have been able to really find my doctor — my specialist — or to really be able to see what a future looks like being diagnosed with PNH,” she said.

Because of these relationships, Brandi felt less alone: “I was able to find people that identified with me, that knew what I was going through as well.” In addition, she gained tips for managing her symptoms, such as restless legs syndrome.

Talking with other people about her condition made a big difference in Brandi’s life. It can be easy to feel alone when living with a chronic illness, especially a rare one like PNH.

Connecting with others who have PNH enabled Brandi to take better care of herself physically. For example, members on myPNHteam share tips about lifestyle habits, including diet and exercise recommendations, that help them feel better.

Building relationships with others with PNH also provided Brandi comfort. “My community understood what I was going through,” she shared.

Brandi now makes it her mission to help support others who have blood disorders such as PNH. As a writer, she covers topics like fatigue and brain fog, and as a speaker, she travels the country to tell others about her PNH experience. She’s now starting a podcast that focuses on persevering through difficult circumstances, whether that’s a serious diagnosis, a loss, or another unexpected challenge. Brandi says she has found purpose through her pain.

Watch the video to see how connecting with others helps Brandi live with PNH.