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Treatment Options
There is no cure for MHE (yet!), but treatments can help manage symptoms. Depending on the size and location of the growths, treatment may include:
Pain Management: Medications or therapies to help manage pain.
Physical Therapy: Exercises to improve movement and strength.
Surgery: Surgery may be necessary to remove large, problematic, and/or painful growths.
Regular check-ups with your doctors and care team are important to monitor and adjust treatments as needed.
Living with MHE
MHE can affect daily life, especially if osteochondromas cause pain or limit movement. Many people manage symptoms well with treatment and support.
Regular check-ups and a healthy lifestyle can help improve quality of life. Support and counseling can also be beneficial for managing the emotional and physical aspects of MHE.
Common symptoms of MHE include:
Chronic Pain: Chronic pain can occur due to the growth of osteochondromas pressing on nerves, muscles, and tendons.
Mobility Challenges: As MHE affects the bones and joints, it can lead to skeletal deformities, joint stiffness, or restricted movement.
Fatigue: Dealing with persistent discomfort or pain throughout the day can leave people physically and mentally exhausted. Physical challenges and limitations require bodies to exert more energy to perform everyday tasks, leading to fatigue.
Support and advocacy
If you have questions or need support, your healthcare provider team can help make connections to physical or emotional support resources.
Additionally, there are organizations and support groups dedicated to helping people with MHE, researchers, and their communities.
Supporting someone with MHE
Supporting a loved one with Multiple Hereditary Exostosis (MHE) involves understanding and being empathetic to their experience with MHE.
Here are some specific ways to offer support:
- Familiarize yourself with MHE symptoms and impact on daily life.
- Listen actively and let your loved one share experiences and feelings about living with MHE.
- Encourage and support interests and hobbies that are enjoyable and comfortable.
- Love your person and celebrate the many unique strengths that come with MHE.
Genetic testing
Genetic testing plays an important role in the diagnosis, management, and understanding of Multiple Hereditary Exostoses (MHE).
Confirming a Diagnosis: Genetic testing is essential for confirming a diagnosis of MHE. While clinical evaluation and imaging (such as X-rays) can suggest the presence of exostoses, genetic testing provides definitive confirmation by identifying mutations in the EXT1 or EXT2 genes.
Inheritance Pattern: MHE is inherited in an autosomal dominant pattern, meaning a single copy of the gene from one parent with MHE can cause a child to have MHE. Genetic testing helps in assessing the risk of inheritance for family members.
Genetic Counseling: Genetic counseling provides information on the inheritance pattern, the risk of passing the condition to children, and reproductive options. Genetic testing results can guide discussions and help people and families make informed decisions.
Risk Assessment for Relatives: For relatives of individuals with MHE, genetic testing can determine whether they carry the same mutations. This can be useful for siblings and children of people with MHE.
Overview and Resources
The MHE Learning System (MHELS) is committed to improving the lives of people with MHE through collaboration and shared learning.
The MHE Learning System is a registered 501(c)(3) nonprofit organization.
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