Gorlin syndrome and your health care

Gorlin syndrome is a complex disease that is not common. Because of this complexity and rarity, the knowledge of how to treat and manage Gorlin syndrome is not widespread among health care providers.

Managing Gorlin syndrome is a team effort with you as captain

Building a care team

As with any chronic disease, the key to healthy success with Gorlin syndrome is to build a trusted medical care team to monitor and treat symptoms. Depending on the needs of the person with Gorlin syndrome, a care team can include a:

  • Primary care physician or pediatrician
  • Dermatologist
  • Cardiologist
  • Oral surgeon
  • Therapist
  • Plastic surgeon
  • Neurologist
  • Gynecologist

Select friends and family are also an asset to a good care team as they can provide support in the day-to-day, including emotional support.

Finding the right health care provider

Finding the right health care provider can be a long process, but it is one that is worthwhile. Research shows that patients who have a good relationship with their providers make better decisions about their health.

Start by asking for recommendations from your current providers, friends and family, or the Gorlin syndrome community. You also can search online directories like Healthgrades or Vitals, which include patient reviews of individual physicians.

It’s ok to audition a few health care providers before finding the right one

From these recommendations, build a list of possible providers and check it against your health insurance to see if they are in your plan. Providers who are in-network will generally have less expensive per-visit copays than providers who are outside of your plan.

Once you have narrowed your search to a few providers, check to see if they are board-certified in their specialty. Board certification requires that physicians have additional education in their specialty and pass a set of exams. To maintain board certification, physicians must complete a number of hours of continuing medical education. You can check physician credentials here: certificationmatters.org.

To help with your decision, you may want to call the providers’ offices and ask:

  • If the provider is accepting new patients
  • Does the provider have experience with Gorlin syndrome
  • Who in the office will see you if your provider isn’t available
  • What type of system they use to send you and your other providers your records

Come prepared to your first appointment with a record of your current medications, surgeries, allergies, symptoms and any other information about your Gorlin syndrome that might be helpful for the provider.

After your appointment, evaluate if the provider and office staff:

  • Made you feel comfortable
  • Explained things in an understandable way
  • Listened to you
  • Spent enough time with you
  • Gave you a chance to ask questions

If they didn’t do most of these things, you may want to move on to the next provider on your list.