Jill Beirl
June is Men’s Health Month, a great time to focus on the many important issues in healthcare that affect men specifically. At the National Niemann-Pick Disease Foundation (NNPDF), we are taking this opportunity to highlight the contributions of an important and growing group of often unsung heroes in our community – the many men who care for people living with Niemann-Pick disease.
In recent years, many of us in the Niemann-Pick community have observed an interesting phenomenon. There has been an increase in the number of men who are stepping into a primary caregiver role. Multiple factors may be contributing to this change, including progress in treatment and patient management that is helping more people with Niemann-Pick to live longer and fuller lives, and societal changes that reinforce that many family responsibilities that have historically been assumed by women can and often should be handled by men either solo or in partnership. At NNPDF we have consistently worked to understand the challenges that caregivers can face and to develop the resources and programs that can ease their burden and help them succeed. It is vitally important that our services reach and support both men and women caregivers, and we must also work to assess any challenges or issues in caregiving that may be unique to or more common among men.
A key issue we work to understand and address at NNPDF is the fact that many caregivers, both men and women, face physical, emotional and financial challenges in their roles, and they often are hesitant to reach out for help. But studies indicate that men are much more likely to not engage in help-seeking behavior and to downplay their physical and mental health symptoms (1,2). Men are also more likely to associate seeking assistance for a psychological or emotional problem with shame or weakness (3). Men who serve as caregivers may also be more prone to feelings of loneliness and isolation because they have limited opportunities to connect with other men who are in similar caregiving roles. These characteristics can have a devastating impact on both caregivers as well as the patients they care for.
To address these challenges, NNPDF is now working in many ways to develop opportunities for male caregivers to connect, learn, and receive the support they need. We offer customized support groups, counseling services, and educational resources to help caregivers learn about best practices and available resources that can help. Our Family Assistance and Support Program provides assistance to families facing unexpected medical expenses or financial hardships, alleviating some of the financial stress they may encounter. Our Family Services program provides many resources and support services that can help families navigate the challenges of living with Niemann-Pick disease. We advocate for targeted resources that address the specific needs of both men and women caregivers to ensure they have access to the support they need. Our annual Family Support & Medical Conference serves as a vital opportunity for caregivers to foster friendships and networks of support that are invaluable during difficult times, and each year more men join and have the opportunity to connect with male peers who understand their unique experiences.
By focusing on and honoring the role that caregivers can play in supporting someone with Niemann-Pick disease, NNPDF is also working to reinforce that seeking help can be an act of courage. It is another reflection of a caregiver’s commitment to getting the job done right and being as effective as possible in the role. This month, we invite all members of the Niemann-Pick disease community to join in celebrating the many selfless and courageous men who have dedicated themselves to caring for a loved one impacted by Niemann-Pick disease. By raising awareness of the role of male caregivers and prioritizing their support, we can create a stronger, more compassionate community that uplifts and empowers all those affected by Niemann-Pick disease. To make sure that all Niemann-Pick families have the support they need at all times, we must take steps to ensure that all caregivers feel recognized, supported, and empowered throughout their caregiving journey.
Contributions through fundraising by NNPDF members, families and friends are used to provide services and information to individuals and families affected by NPD, as well as supporting research into finding treatments. Please continue to host and support NPD fundraisers. Awareness Events promote awareness to the general public about Niemann-Pick Disease.
Scholarship funding is available to help families attend the 2023 NNPDF Family Support and Medical Conference. NNPDF members living in the US are eligible to apply for scholarship assistance. The NNPDF Family Conference Scholarship is available for families to help ease the cost of attending the family conference. This scholarship is limited to immediate family members of an individual with Niemann-Pick Disease.
THANK YOU
The International Niemann-Pick Disease Registry (INPDR) is conducting this survey in collaboration with The National Niemann-Pick Disease Foundation, Inc. (NNPDF), International Niemann-Pick Disease Alliance (INPDA), and Niemann-Pick UK (NPUK). This survey forms part of a larger study that includes interviews with Niemann-Pick disease type A/B and type B (ASMD) patients, which will explore the questions in this survey in more depth.
