Your healthcare team
Experts recommend regular check-ins with a coordinated healthcare team as highlighted in the International Guidelines for the Management and Treatment of Morquio A (The Guidelines). The Guidelines were developed to help doctors better evaluate, manage, and treat Morquio A.
Your geneticist plays a key role in your healthcare team in Morquio A diagnosis and care. A geneticist takes the lead in:
- Coordinating many aspects of your treatment plan
- Scheduling visits with specialists who monitor different symptoms. Specialists check with their patients regularly to keep track of symptoms
The Guidelines state that disease-specific management strategies should be started as soon as possible after diagnosis. Find out more.
Surgeries can help prevent further damage from Morquio A or correct issues that already exist, such as corrective procedures for ankles, knees, and hips, as well as spinal decompression or fusion of vertebrae.
It may feel like you see many doctors, but know that you are not the only one. Read the stories of others with Morquio A by joining MorCommunity.
To make sure your management plan is working, The Guidelines provide detailed recommendations for how often each of your body systems should be checked. It’s important to work with your geneticist to make a personalized management plan that is right for you.
Transitioning to adult care
As children with Morquio A become adults, it’s important for them to start becoming more involved with their own healthcare. The Guidelines stress the importance of teenagers and adults with Morquio A taking an active role in coordinating their own care and communicating with their healthcare providers directly.
- In some cases, making the transition to adult care means switching from a pediatrician to a new set of adult doctors
- It’s important to make sure that the new doctors are knowledgeable about Morquio A and the The Guidelines’ recommendations
- Start an open communication between you and your doctors.
Hear about his journey with Morquio A.