4 helpful resources for those new to a PNH diagnosis

No one thinks they’ll hear the words “you have paroxysmal nocturnal hemoglobinuria (PNH)” — until they do. No one is prepared to navigate a PNH diagnosis — until they must. The beginning of this journey can feel like climbing a ladder in a pitch-dark room, your arms outstretched in search of guidance.

When I was taking my first steps on this ladder, my greatest source of guidance was the PNH community. Other patients educated me about the disease and provided support and compassion.

Since I embarked on this journey a few years ago, I have met several newly diagnosed PNH patients on social media whom I’ve been able to mentor. Connecting with other patients when I was diagnosed was hugely beneficial, so it’s meaningful to come full circle and be there for others.

When I meet a new patient, I share a list of resources I’ve found to be super helpful. I like to provide places where they can learn about PNH, connect with other patients, apply for copay assistance programs, and find paid interview opportunities.

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1. PNH News

PNH News is a wonderful source of information. In addition to providing standard education on topics like PNH symptoms and treatments, this website offers insight into real patient experiences through columns like mine! My friend Brandi Lewis also writes a column about her experiences with PNH and aplastic anemia.

2. Facebook support groups

One of my biggest takeaways from connecting with other patients is that, in terms of our locations, lifestyles, additional health conditions, and other things, we’re all so different. I once met a new patient online who shared a specific experience with me, but I couldn’t offer any guidance because I hadn’t been through it myself. I encouraged this person to keep connecting with other patients, as someone else would likely have more thoughts on the matter, but I said my door would always be open for them.

The PNH Patients – Support group on Facebook has been my biggest blessing. I’ve found companionship, formed new friendships, received feedback from people going through the same thing as me, and most importantly, discovered hope upon seeing how other people live with PNH. (Note that this support group is for patients only.)

3. NORD and TAF

The National Organization for Rare Disorders and the Assistance Fund are two of many organizations that provide copay and other assistance for patients. I had no idea programs like these existed at the time of my diagnosis, but since then, they have been immensely helpful. Both of these organizations offer PNH-specific programs, but note that you do need to apply for assistance, and acceptance is not guaranteed.

4. Rare Patient Voice

Rare Patient Voice provides opportunities for patients to share their experiences through paid interviews, surveys, questionnaires, and more. The organization serves as an intermediary between patients and pharmaceutical companies, helping patients to have their voices be heard. I’m grateful to have participated in many of these opportunities, which always seem to be therapeutic and fulfilling.

What guidance would you give someone who’s new to a PNH diagnosis? Please share in the comments below.

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

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