Finding Care

Living with FSHD requires a team approach. In order to get the care you need, you may need to see a few different types of doctors and providers. Read more about the providers you might want to include on your care team below.

Introducing the Care Connector!

One way to find a new doctor is by searching the FSHD Care Connector! The question we get asked most frequently is, “Do you know a doctor in my area who knows about FSHD?” We can’t give recommendations for one doctor over another, and we can’t guarantee just how knowledgeable any one doctor is. But, we do know who has seen other FSHD patients – and that’s a good start! Use our new, searchable map tool to help curate your healthcare team.

FSHD Care Connector

Your Healthcare Team

Every person is different, and no one knows your body as well as you do. There are many specialists you may want to consider if you are in search of care:

  • Primary Care Physician (PCP) or General Practitioner (GP): The doctor you see for annual check-ups, vaccinations, and non-emergency care.
  • Neurologist / Neuromuscular Specialist: We recommend establishing yourself as a patient with this type of specialist. They will tend to know more about your FSHD than a PCP/GP. In the future, when treatments become available, it is likely that this type of specialist will be most able to prescribe it.
  • Occupational Therapist (OT): This provider will assess the challenges you might be having at work or home, and can recommend modifications, devices, or exercises to live and function more easily.
  • Physical Therapist (PT): This provider can help you maintain strength and function, ease pain, and manage joint health through exercise. Getting one who knows (or is willing to learn) about progressive muscle diseases can be a great help long-term.
  • Pulmonologist: This doctor will test your lung strength, and can offer help with breathing challenges. For example, in sleeping issues with FSHD, it is important to consider using a BiPAP machine rather than a CPAP, and a Pulmonologist will help you find the right solution for you.

The list goes on… there are many, many types of medical specialties. Start by having a conversation with your primary care doctor, and they should be able to refer you to the right kind of specialist to meet your needs.

Patient engaged in FSHD Researchg
Ian Rys and Dr. Rabi Tawil

Updated Standard of Care

We have brought together the world’s foremost expert clinicians in caring for FSHD patients. This group has poured their expertise into the new FSHD Care Guideline. This resource can help doctors treating FSHD patients, and it can help FSHD patients advocate for themselves in the healthcare system.

FSHD Care Guideline for Patients & Families
FSHD Care Guideline for Clinicians

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Looking for a local resource?

There are volunteer-led Chapter groups in over 30 locations! Connect with your nearby Chapter to meet neighbors and friends also living with FSHD.

 

Find Your Local Chapter