If you’ve been recently diagnosed with PNH, you may feel very isolated and alone. Since it’s such a rare condition, chances are you don’t know anyone else with this disease – and your medical team may not, either. There are only about 400 or 500 cases of PNH diagnosed each year in the United States.
But it’s important to get out there and find others who have PNH. Research shows that people who live with a rare disease, and their caretakers, are 3 more times more likely to report that they have feelings of unhappiness and depression. Social support can help. Here’s why it’s important, and where you can go to connect with others who live with PNH.
Why Is Social Support Important for People With PNH?
Studies show that people with chronic diseases who have strong social support have better overall well-being than those who don’t. It also provides a buffer against day-to-day stress: One study found that social support boosts resilience in stressful situations.
One way to get this support is to connect with others who have PNH. When you talk to them, you may learn that you share similar emotions and concerns. It helps to know that someone else is so fatigued that they, too, struggle with work or have similar side effects. When you take part in a support group, you may:
- Feel less lonely.
- Have fewer feelings of depression and anxiety.
- Have more motivation to stick to your PNH treatment plan.
- Learn new skills to tackle common PNH-related challenges.
- Gain a sense of empowerment and hope.
- Get information about various treatment options, including side effects.
- Find out about other resources, such as nearby doctors who are well-versed in PNH treatments or organizations that provide financial support.
Where to Find Support Resources for PNH
If you have PNH, it can be a challenge just to get through the day. You don’t want to waste valuable time and energy searching for other people with the condition. Here are some tips to make it easier.
Start with your medical care team. Your PNH specialist may be able to refer you to a support group, either online or locally. They also may have nurse practitioners you can talk to for informal counseling.
Reach out to patient organizations. There are very few organizations out there devoted to PNH specifically. But some may be able to provide guidance. The AAMDS International Foundation, for example, offers a patient helpline that you can call. They can provide emotional support and connect you with a Peer Support Network volunteer. The National Organization for Rare Disorders also offers a support helpline where they provide information on how to find a specialist in your field and may provide financial assistance as well.
Try a support group. Research shows that people who take part in them have less anxiety and depression. They have a better quality of life and are better able to cope with their health condition. These groups may be in person or online.
Search social media. You can find online groups on sites like Facebook that are geared toward people who live with PNH. One benefit of these groups is that they give you the option of constant social support, 24/7, no matter where you are. Just be aware that some social media groups may push untested treatments or products. Look out for ones that promise to cure PNH or pressure you to buy certain products or services.
Get professional help. If you find you can’t find other patients to connect with, or if you still feel anxious or overwhelmed, it may help to see a psychologist. They can help you manage the stress you may feel living with PNH. Your medical team may be able to offer or a referral, or you can use the American Psychological Association’s psychologist locator service to find a therapist in your area. You can also visit MentalHealth.gov, which is a website of the U.S. Department of Health and Human Services.
Reach out to family and friends. You may not want to burden them with your worries about your PNH diagnosis. But if you discuss the condition, and its impact on your daily life, it’s easier for them to offer you support. It’s also a good way to share your feelings and emotions. It may help to make the conversation as specific as possible – for example, a low hemoglobin level – to keep the conversation focused.
You may find it hard to ask for help, and your family and friends may want to do what they can, but don’t know how to ask. Think about specific ways they can help you. For example, they can come with you to a doctor appointment, take notes for you, and then talk to you about your feelings after the visit.
Remember that you don’t have to go through your PNH journey alone. Once you find others with the same diagnosis, you’ll find it less isolating, and you’ll be more empowered as a patient, too.
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Aplastic Anemia and MDS International Foundation: “PNH-Paroxysmal Nocturnal Hemoglobinuria.”
Orphanet Journal of Rare Diseases: “Supportive Care Needs of Patients with Rare Chronic Diseases: Multi-Method, Cross-Sectional Study.”
Journal of Health Psychology: “Living Well with Chronic Illness: How Social Support, Loneliness and Psychological Appraisals Relate to Well-Being in a Population-Based European Sample.”
Psychoneuroendocrinology: “Stress Recovery with Social Support: A Dyadic Stress and Support Task.”
Mayo Clinic: “Support Groups: Make Connections, Get Help.”
European Society for Blood and Marrow Transplantation: “Understanding PNH.”
Agency for Healthcare Research and Quality: “Next Steps After Your Diagnosis: Finding Information and Support.”