Dysautonomia Center

13/02/2025

26/07/2024

What is Dysautonomia? Dysautonomia is a term used to describe a group of medical conditions caused by problems with the autonomic nervous system (ANS). This system controls many involuntary functions in the body, such as heart rate, blood pressure, digestion, and temperature regulation. When it doesn't work properly, it can cause a wide range of symptoms. What are the causes?...

What is Dysautonomia? Dysautonomia is a term used to describe a group of medical conditions caused by problems with the autonomic nervous system (ANS). This system controls many involuntary functio…

29/02/2024

For decades, we’ve been dedicated to supporting patients and their families through this journey. And we’re not stopping anytime soon. ⭐️ Our commitment to understanding and improving the lives of those with Familial Dysautonomia remains strong. 🤝 Together, let’s continue supporting and studying FD until every challenge is met with a solution.

29/02/2024

Today, on the rarest of all days, we honor Rare Disease Day 🌟We extend our gratitude to every patient and their families who bravely navigate the journey of Familial Dysautonomia alongside us. Your strength and spirit inspire us every day. 💜

24/01/2023

Attention all parents and caregivers! We will be hosting a virtual support group for parents and caregivers on Wednesday Feb 1st and Tuesday, Feb 7th, 2023. Please RSVP in the link in the bio if you are available to join!

19/01/2023

Are you prepared for the year 2023? Make 2023 a -focused year for you and your family. An annual visit is the most important step in getting an overview of your health and anticipating problems that may arise due to familial dysautonomia. Keep track of your pulmonologist, gastroenterologist, and ophthalmologist appointments to ensure your lung, GI, and eye health are optimized!
 
Caregivers and family members should be able to perform the Heimlich maneuver and with confidence. Sign up for a local CPR training if you haven't had one in the last two years.
 
Keep your imaging and labs up to date! Annual and pulmonary function tests are recommended. G-tube changes are performed twice a year, and an echocardiogram and sleep study are performed every two years.
 
We surveyed the FD community and some home must-haves include specimen containers for UTIs or Cdiff infections. Non-slip socks are essential for tiled floors. A shower chair can help prevent falls or fainting episodes in the shower during illness. Gait belts are a type of safety aid that can help a patient sit, stand, or walk around, as well as transfer them from a bed to a wheelchair.

Call the NYU Dysautonomia Center to make an appointment for more advice on how to stay healthy and active this year and make it the best one yet!

22/12/2022

Caring for a loved one with a rare condition can feel very isolating. You may feel overwhelmed, exhausted, or lost. You may have questions about tackling burnout, caregiver fatigue, or resources. Or maybe you just want to know how others do it.

Let’s talk.

The NYU Dysautonomia Center is excited to launch a virtual mutual aid support group for FD parents and caregivers to meet and discuss these and other issues in January 2023. The monthly or bi-weekly Zoom sessions will be hosted by NYU Dysautonomia Center and FD Foundation social work intern/MSW candidate Matthew Hertzberg.

During meetings, group members will come together to enhance caregiver coping skills through mutual support and information-sharing. This group will rely heavily on the participation and experience of the group members. Participants will be encouraged to offer their thoughts and feelings around FD-specific topics in an empathetic, non-judgmental environment.

Each person with FD is different and every family has a unique story. Sharing your journey with others may build resilience, reduce stress, and foster new friendships.

If interested, please click here or use the link below to complete a short questionnaire and Matthew will contact you with more details in early January.
If you are interested, please fill out the link in bio!