Research brings promise to the future! Awareness brings hope now!
Most people don’t know much about neurofibromatosis (NF). Even the ones that do don’t always understand the terrible challenges of NF and the needs of people with NF. Some people with neurofibromatosis are invisible and may suffer physically and emotionally on the inside from both the complications of NF and the frustration of not knowing their future. Others suffer tremendously from the obvious complications of NF. Feeling misunderstood and marginalized, they will withdraw from society.
The only way to improve the future of those with neurofibromatosis, and to ease their challenges, is to increase the support society offers. For that, more people need to know that neurofibromatosis exists, understand how awful it can be, and want to make a difference.
Neurofibromatosis Midwest and other NF organizations are on a mission to raise the visibility and awareness of the neurofibromatoses to a much higher level, not only to improve care, but also to reduce the stigma.
NF Midwest staff, supporters and patients are visible at professional meetings for neurologists, geneticists, counselors, therapists and other professionals providing continuous exposure and visibility for NF1, NF2 and Schwannomatosis. We work to build relationships with funding agencies, decision-makers and community leaders, encouraging their active engagement in NF care and research. Through patient involvement and activism, and with patients visible as stakeholders in the clinical management of NF, the NF community is working towards bringing NF out of the darkness and into the light.
The neurofibromatoses are so complex that current research is focused on dozens of different complications from the disorders, not on a cure. Current research may help improve treatments, but as much as we don’t like to admit it, there is no miracle cure for NF on the horizon. Because NF is genetic, there will always be more people born with it.
You can become an activist and help raise awareness for NF. We have included here some tools to help. You may also contact the office about other ways to raise awareness.
The Effect of Awareness
- Creates more informed, experienced physicians and increases access to appropriate therapy and better care.
- Helps people with NF to better understand the disorder so that they can better care for themselves and seek out appropriate care providers.
- Leads to more understanding and empathy for those who have to go on disability.
Better Quality of Life
- More understanding of what living with NF is would allow the public to help people with NF live fuller, happier lives, and minimize the burden of their NF. People with NF often hide their disease from friends and family, and when they cannot do that anymore they disappear from society altogether. Our ignorance makes those with NF feel misunderstood, discriminated against, and marginalized, leading to loneliness, depression and decrease in quality of life, all of which further exacerbate the negative impacts of NF.
- Employment can sometimes be a problem for people with NF. As they get fired or pushed into retirement prematurely, often soon after diagnosis, losing their incomes and ending up alone and isolated. A better understanding of NF would help employers learn how they can use people with NF, which will help them as well as the broader society, by keeping those with NF active in the economy.
- Leads to more public support for NF research and more funding for research and other support programs.
- Moves NF higher on government agendas – Governments are the ones who can provide easier, cheaper access to treatment, more doctors, improved diagnosis, and more support services.
- Focusing exclusively on research limits support to the existing pool of people who already understand the case, so more research does not unfortunately lead to increased awareness
Contrast: Neurofibromatosis vs. Cancer
- Everyone knows what cancer is. Few really understand what NF really is. Fewer still understand its challenges.
- Cancer needs just better treatments, so only more research.
- NF needs better treatments too. But NF needs significantly more awareness and education.
- NF research actually benefits cancer as well as many other disorders and is thought to affect 175 million Americans with related disorders and complications.