When Maegan Voss first Googled “PNH,” they remember finding only one article about this rare form of anemia. “You know, it was something, and I clung to it so much,” they said. Like others who have been diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), Maegan — who uses the pronouns they/them — wanted insight on how to live a full life with this rare condition. “There’s really not a lot out there,” they noted.

Finding a Path Forward

Since Maegen’s first efforts to find information on PNH, they’ve found ways to adjust to life with PNH and the changes that have affected their daily life. At times it hasn’t been easy. PNH can cause debilitating pain and in severe cases can lead to bone marrow failure. “I’m trying to take the time to rest and to just enjoy existing in my body even if I can’t have a job in the traditional sense. I have dealt with financial troubles because of that, and because of my illness,” they explained.

“I’m trying to take the time to rest and to just enjoy existing in my body even if I can’t have a job in the traditional sense.”

— Maegan, a myPNHteam member

Fortunately, health care providers and social workers helped Maegan get government assistance, which has given them some financial security. For Maegan, this support has helped them feel they have choices about how they want to live. “There are pathways forward to having some form of self-determination,” Maegan said.

Having Friends With PNH Is Huge

Maegan is looking forward to building a community of others who understand what they’re going through. “What I'm excited about for the future and with myPNHteam is to have other people who have PNH to bounce things off of because it’s so rare,” they said. “I think having friends that also have it could make a huge difference.”

Having a supportive community has allowed Maegan to think deeply about their life and dreams. “I’m lucky to have an amazing support system. I’ve been blessed, because this time where I’m not working in a traditional sense has allowed me to actually dream big and prepare myself to follow those dreams,” Maegan shared.

Doing What I Love

PNH hasn’t dampened Maegan’s enthusiasm for their life ahead, despite the challenges. Their dreams include creative pursuits such as writing, painting, and playing music, along with standing up for people with PNH and other disabilities.

“There’s a beauty to living on and being strong and taking care of yourself, even if your life is different than other people’s.”

— Maegan, a myPNHteam member

For Maegan, it’s important to do things that they find meaningful and gratifying. “I want to write a book about my experiences. I really want to be an advocate for disabled people, and I’d like to be a little bit better at guitar and bass. I would like to show my paintings in galleries,” they said, “and just live a life where I’m doing what I love.”

The Beauty of Staying Strong

Maegan has also come to realize that self-care and resilience can be a profound part of managing one’s life while living with a chronic illness such as PNH. “There’s a beauty to living on and being strong and taking care of yourself, even if your life is different than other people’s,” they said.

Talk With Others Who Understand

On myPNHteam, the social network for people with paroxysmal nocturnal hemoglobinuria and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with PNH.

What dreams are you following while living with PNH? Share your experience in the comments below, or start a conversation by posting on your Activities page.