Fewer than 50,000 people in the United States live with paroxysmal nocturnal hemoglobinuria (PNH). It’s a blood disease that impairs the production of red blood cells.
PNH causes the destruction of red blood cells, known as hemolysis. The severity and effect of PNH can vary from person to person. Some may only have mild symptoms, while others may experience severe symptoms and require a blood transfusion.
Caring for a person with PNH can sometimes be challenging. But there are a number of resources available that can help alleviate the pressure that caregivers experience. These resources can help you navigate the complex medical, financial, and emotional challenges involved in caring for someone with a rare disease like PNH.
Dealing with a diagnosis of PNH can present challenges for the individual as well as their family members and those caring for them. There are a number of resources available for those caring for a person with PNH.
The Aplastic Anemia & MDS International Foundation (AA MDS) is the leading global not-for-profit organization that supports those living with bone marrow failure diseases such as PNH, their families, and caregivers.
The foundation provides resources that help them navigate the various phases of living with PNH, including:
- the diagnosis phase
- the treatment phase
- the lifelong condition-management phase
For caregivers, the AA MDS has a dedicated section on its website devoted to addressing some of the queries and concerns carers may have when caring for a person with PNH. This includes:
- general advice for caregivers
- guidance on caring for people with PNH in different life stages
- how to deal with caregiver stress
Rare diseases like PNH may present a number of financial and economic challenges. This may be a source of stress not only for individuals with PNH but also for their caregivers and family members.
There are numerous financial resources that can assist caregivers in navigating the financial side of dealing with PNH.
The National Organization for Rare Disorders’ Paroxysmal Nocturnal Hemoglobinuria (PNH) Patient Assistance Program helps eligible people with PNH access financial support.
To be eligible for the program, individuals must:
- be a U.S. citizen or a U.S. resident for 6 months or more (and provide evidence of residency)
- have a diagnosis of PNH
- meet the program’s financial guidelines
If accepted, those in the program may receive support with out-of-pocket medical expenses related to PNH including:
- diagnostic tests
- laboratory tests
- medical appointments or consults
- health insurance deductibles, premiums, copayments, and coinsurance costs
Other resources for financial assistance for those living with PNH include:
American Cancer Society, which can provide assistance with lodging and transport for treatment
- The BMT InfoNet Patient Assistant Fund, which helps patients and their caregivers with living expenses with grants of $100-$200
- The Children’s Organ Transplant Association, which helps raise funds for children and young people needing transplants
- Help Hope Live, which helps with fundraising efforts for medical expenses
- The Leukemia Research Foundation Patient Grant Program, which provides a one-time grant to eligible people living with leukemia who live in Illinois or within 100 miles of Chicago
- The Social Security and Supplemental Security Income disability program, which provides assistance to those living with disabilities
There are a number of programs and organizations that may be able to help with the costs of medications. These include:
- Cancer Care Co-Payment Assistance Foundation
- Blood Cancer Foundation of Michigan
- HealthWell Foundation
- Needy Meds
More information about medication-related resources is available at the AA MDS International Foundation.
Caring for a person with a rare disease can present a variety of challenges. Those in a caregiving role may at times feel stressed, isolated, or overwhelmed. It is important to remember that help is available for those who care for others.
The AA MDS offers support networks by phone, online, or in person either one-on-one with another person or in a group.
These support groups can be a helpful way to meet others in a similar situation, share coping strategies, and help each other problem-solve. Being able to speak with others who are willing to offer support and comfort in a time of need can be beneficial for those in a caregiving role.
Caring Bridge is a free online platform where people can share health updates and receive support from others. Like a social network, family and friends can visit the site to keep up to date with the latest news in a person’s health event as well as offer support.
Lotsa Helping Hands is an online platform that can help caregivers share the load of caring for a person who is unwell. The platform can be used to coordinate meal deliveries from family or friends or help others volunteer their time to assist with rides to appointments when caregivers need some support or respite.
Caring for a person with PNH can involve a variety of challenges, but there are numerous resources available.
The AA MDS International Foundation provides a comprehensive list of resources that may be helpful for those caring for someone with PNH. These include:
- insurance and copay assistance
- veteran resources
- pediatric resources
- transplant resources
- aging resources
- end-of-life resources
Caring for a person with PNH can present a variety of challenges. Carers may at times feel stressed or overwhelmed when navigating the complex emotional, financial, and medical challenges that PNH can bring.
If you are caring for someone with PNH, it’s important to remember that you’re not alone and help is available. Reaching out to patient organizations, applying for funding or grants, and joining a support group are all positive steps you can take to make caring for a person with PNH a little bit easier.
It’s OK to ask for help. Remember: As a caregiver, you need to look after yourself, too.