Management

Since there is no cure for Myhre Syndrome, treatments are mainly focused on managing the symptoms. It's very important for patients to be referred to physical therapy and special education programs, and for their families to get support (such as through the Myhre Syndrome Foundation).

Here are some important points
Heart and lung evaluations are crucial because problems with these organs are some of the leading causes of death. Growth hormone is not recommended for treating short stature currently. For surgeries, less invasive methods should be used, as too much damage to tissue can lead to narrowing or scarring. To reduce the risk of damaging the airways during intubation, it’s better to use a smaller tube.

Ongoing Research on Treatments
Losartan, a medication that blocks certain receptors, works by indirectly affecting a signalling pathway called transforming growth factor beta (TGFβ). In lab tests on tissue from patients with Myhre syndrome, Losartan reduced the accumulation in the tissue. As a result, three patients with Myhre syndrome were treated with losartan, and improvements were seen in skin thickness, joint movement, and heart function. However, more research with larger groups of patients is needed to fully understand how effective losartan is in treating skin, joint, and heart problems in Myhre syndrome.