How often should an individual be seen at the Mass General Myhre Syndrome Clinic?

After the initial multi-specialty evaluation, the frequency of follow-up clinic visits is personalized. For this handout, it is not possible to provide a single schedule for all people.

In general, we re-evaluate individuals every 1-3 years. In the meantime, patients should be followed at home by a primary care physician (PCP) and specialists. Please notify us of changes or concerns.

We take into consideration whether an individual with Myhre syndrome is experiencing one or more active problems that require frequent follow-up. If so, then an annual visit with our team is advised.

Rarely, some issues require a visit every 6 months.

A person who is doing well may need less frequent checkups for overall health, as long as they are monitored at home. For example, regular clinic visits with the heart doctor are part of the treatment plan for individuals who have aortic narrowing, renal artery narrowing, or high blood pressure. As needed, the kidney specialist is seen.

Some individuals have medical support at home with specialists who understand Myhre syndrome. They can rely on them for most issues.

Other individuals with Myhre syndrome who are healthy with few medical problems might focus their care plan at home on learning and therapy, such as speech therapy or ABA therapy for autism.

Is it important to have periodic visits to the Myhre Syndrome Clinic?

It is valuable for both adults and children with Myhre syndrome to have periodic visits to the Mass General clinic, as well as their care at home. This helps to:

  • Maintain an active relationship with the Mass General specialists who have the greatest experience. We are strong educators for patients and physicians.
  • Increase chances of early detection with potentially treatable complications.
  • Identify new symptoms such as stiff joints or high blood pressure (hypertension) that might otherwise go unnoticed.
  • Stay up to date on new advances in the field.
  • Of course, we are sensitive to the cost of medical care, and the challenges of travel, especially now. We are flexible, and always looking for ways to help.

The role of Telemedicine

A virtual visit can be an excellent way to begin a relationship with a Mass General specialist. This is also useful to obtain follow-up care. These virtual visits are intended as a bridge to an exam in person.

As of June 2021, Mass General physicians can provide a virtual visit only in the states where they have a medical license. As of September 2021, this option is limited to Massachusetts. Different providers may also obtain licenses in Maine, New Hampshire and Rhode Island.

Rev. 9/2021. Mass General for Children and Massachusetts General Hospital do not endorse any of the brands listed on this handout. This handout is intended to provide health information so that you can be better informed. It is not a substitute for medical advice and should not be used to treatment of any medical conditions.