Because paroxysmal nocturnal hemoglobinuria (PNH) is a rare condition, many people may struggle to find the support they need. One patient advocate offers ways to cope.

Paroxysmal nocturnal hemoglobinuria (PNH) is a rare condition that causes low blood cell levels and sometimes bone marrow failure. It sometimes develops in people who have another blood disorder known as aplastic anemia.

Living with a rare condition like PNH may feel lonely at times. Social support from family members or friends may help you manage the challenges of this condition. You might also find it helpful to connect with other people living PNH, aplastic anemia, or other bone marrow or blood disorders.

To learn more about the benefits of social support and how to find it, Healthline spoke with patient advocate Selena Burland. She received a diagnosis of severe aplastic anemia and PNH in 2022, and she has since received a bone marrow transplant to treat both conditions.

Here’s what she had to say.

By the time I got my diagnosis, I had severe aplastic anemia as well as PNH. One of the really hard things was not having energy. I was so fatigued, and my blood cell levels were so low, that I physically couldn’t do much.

My husband was my number one support. He was willing to do the dishes, do the laundry, do whatever needed to be done. And if I didn’t want to talk about things, he wouldn’t force it.

Sometimes as a friend or family member, you might want to bombard somebody: “Oh, let me do this for you, let me do that, let’s talk about it.” And sometimes it’s too much. It can almost feel like it’s taking away your freedom.

It’s important to simply be there for the person and let them deal with it the way they need to.

If they want to talk about it, just listen. Listening is such a good thing, instead of trying to put in your two cents here and there.

And if they don’t want to talk about it, don’t force them. If they want to rest or go have some fun, let them do those things. Because they want to feel like a normal person again.

I think social media has been the best thing. Reaching out to people, searching up hashtags, things like that.

The really cool thing about social media was as soon as I started posting about my experiences, I had so many people around the world contacting me.

I post things all the time on Instagram, and I have a big group chat going with girls who have aplastic anemia, or have had a bone transplant, or things like that. We share questions or just send a message, and people in the group respond.

There’s also an app called CancerBuddy that I joined. Even though my specific condition doesn’t come up as an option, I could still join. And I found some girls there who had even more rare bone marrow or blood disorders.

I think if I didn’t post about my experiences on social media and have people reaching out to me about it, I would have felt really lonely. Because a lot of people don’t understand.

There’s not a single person in my city that I know of that has aplastic anemia or PNH. Even when I traveled to Seattle for my transplant, not a single person there had what I had.

And one of the hard things about going through a trauma or illness like this is you can lose a lot of friends. A lot of times when you get your diagnosis, it’s like, “That’s who she is now.” People sometimes treat you so much differently.

I’m still in my 20s, so a lot of my friends are still wanting to party, go out, and stuff like that. And when you’re having years of extreme health issues, they start to leave you out because they know you can’t do those things.

So it’s been really important to have all these new friendships that I’ve been developing through social media and with other girls that have gone through similar things

It’s been really important to connect with other people that understand it. They can help with issues that you feel lost or alone about. And there’s so many unknowns, so it’s good to say, “Oh, I’ve had this happen. Is this normal? What did you do for this?”

It can be hard to share your story — but the more I’ve been posting about it and connecting with other people, the more they’ve been wanting to share their story, too. If you’re willing to put yourself out there, you can help other people. And they can also end up helping you.

Selena Burland is a 26-year-old social media influencer and entrepreneur, who owns her own esthetician business in Spokane, Washington. She learned that she had severe aplastic anemia and paroxysmal nocturnal hemoglobinuria in 2022. After undergoing a bone marrow transplant, she’s now in remission from both conditions.