Receiving a PNH diagnosis can feel overwhelming, but you’re not alone. Look in the right places, and you might be surprised how robust both in-person and online support systems can be. There are people out there who can provide you with solace, understanding, and companionship, as well as evidence-based information about PNH and the latest treatments. Teresa van Oort, a licensed clinical social worker and the clinical program manager at the University of Texas MD Anderson Cancer Center in Houston, urges people to reach out for support soon after being diagnosed with PNH. “Even if you think you’re good,” she says, in addition to working with your treatment team, be sure to talk to a social worker or psychiatrist or psychologist — someone in this support realm — and use the resources they offer.
Where to Find PNH Support
Not sure where to start? Check out these resources for PNH support.
Your care team
Establishing a specialized PNH care team is essential, as they can be your go-to source for information, ideas, and guidance. Articulate that you’d like support for yourself and for the family members caring for you. You can also ask for emotional and psychological help specifically or input from a social worker.
Blood and rare-disorder organizations
The Aplastic Anemia and MDS International Foundation (AAMDSIF) and National Organization for Rare Disorders (NORD) are excellent places to start looking for support, because the information they provide is reliable and evidence based. They also offer ways to find PNH experts, links to local support organizations, and help in assembling a support system.
Peer-to-peer support
People with rare disorders such as PNH can also look for volunteer patient-to-patient support networks, says van Oort. For example, where she works, they provide a program called myCancerConnection, and many cancer and hospital systems offer similar programs. The AAMDSIF also offers ways for people to connect with peers who have a similar diagnosis or treatment plan and can help you reach out by telephone, online, or in person.
Support groups
Most cancer centers offer in-person support groups; ask your oncologist or another member of your care team who to contact. While you may not find one near you that’s specifically for PNH, general blood-cancer support groups, such as those run by the Leukemia & Lymphoma Society at locations nationwide, can be a good option in many cases, says van Oort. The reason: Discussion tends to be more inclusive of a swath of experiences — surviving chemotherapy, for example — than chock-full of very personal stories that can end up making you feel more isolated or misunderstood because your journeys don’t match. During the Covid-19 pandemic, many in-person meetings migrated to Zoom and other online platforms and will likely stay that way or convert to hybrid (in-person mixed with virtual) options.
Financial support
The cost of treating a blood disorder adds up and often requires multiple visits to the doctor. While every person’s case is different, “A hematology diagnosis tends to take an average of a year or more to treat,” van Oort says. “A year of chemotherapy and then a year of stem cells and then a year of post–stem cell therapy on top of that, plus $12 a day for parking … it adds up!” Van Oort encourages every person newly diagnosed with PNH to apply for grants and financial support up front. This can reduce the significant stress that comes later on, when the financial reality hits. To help pay for medicines, she recommends looking for patient assistance programs for people with PNH. Try reaching out to NORD’s RareCare patient assistance program online or by calling 1-800-999-6673 for help navigating options.
Social media support
Facebook Groups and other social media platforms have vastly widened the ways you can meet other people with your specific condition around the country and the world. For example, Judith, an office administrator and grandmother in Salina, Kansas, recalls the enormous relief she felt when connecting to others with PNH. That was in 2006, when she was first diagnosed, and the Internet was only offering simplistic chat room technology. Still, swapping stories and information was a revelation then and enormously helpful, she says. Fast-forward to a more evolved Internet, where options for reaching others have multiplied. Just keep in mind that people process illness and difficulties differently. “If something doesn’t seem to make sense to you, talk to your medical team about it,” says van Oort, especially if there is a question about a treatment and whether it’s wise to pursue.
Pay It Forward
For many people, giving support feels like getting support. If that’s true for you, consider joining the AAMDSIF Global PNH Patient Registry, designed to collect and share data on this rare illness around the world, covering everything from symptoms and diagnosis to treatment improving quality of life.
