Care Team for Patients with MHE
People with MHE may benefit from a multidisciplinary care team. Members of the care team who are involved in providing care may include the following roles.
Orthopedic Surgeon
- Plays a core role in the care and treatment of MHE.
- Manages skeletal deformities and physical symptoms caused by osteochondromas.
- Evaluates and performs surgical interventions, such as excision of symptomatic osteochondromas or correction deformities.
- Monitors for complications like nerve impingement, vascular compression.
Genetic Counselor
- Provides genetic counseling for the patient and their family.
- Offers genetic testing for confirmation of the condition and identifies the specific gene mutation (EXT1, EXT2).
- Facilitates conversations about family planning and the risk of passing MHE to future children.
Primary Care Physician (PCP)
- Refers to specialists and oversees routine health management, including monitoring growth and development in pediatric patients.
Radiologist
- Interprets imaging studies (X-rays, MRI, CT scans) ordered by the Orthopedic Surgeon to evaluate the location and size of osteochondromas.
- Plays a role in detecting complications like malignant transformation (which may require advanced imaging studies).
Physical Therapist (PT)
- Helps in managing pain and improving mobility and strength.
- Designs programs tailored to to help with range of motion, flexibility, and muscle strengthening.
- Assists in the rehabilitation process post-surgery.
Occupational Therapist (OT)
- Provides support for functional challenges, especially if MHE affects daily activities, such as dressing, personal care, and working.
- Helps with adaptive devices or techniques.
Pain Management (if needed)
- Assists in managing chronic pain, which can occur due to osteochondromas pressing on soft tissues and nerves, or causing skeletal deformities.
- Uses a combination of medications, physical therapies, and possibly interventional procedures to alleviate pain.
Psychologist or Psychiatrist (if needed)
- Provides mental health support, especially for patients who may experience emotional or psychological distress related to chronic pain, body image issues, or the challenges of living with a genetic condition.
- Offers counseling and coping strategies for anxiety, depression, or social difficulties.
Care Manager or Social Worker (if needed)
- Provides support for navigating the healthcare system and accessing resources like financial aid, durable medical equipment (ex: wheelchairs), educational accommodations, or disability services.
- Helps coordinate care across multiple specialists and addresses any social or practical challenges the patient may face.
Orthotist (if needed)
- May design custom orthotics or braces to help correct skeletal deformities, assist with mobility, or provide support for weakened joints.
Oncologist (if needed)
- In rare cases where there is concern for malignant transformation of an osteochondroma into chondrosarcoma, an oncologist will be involved for cancer diagnosis and management.
- Works closely with orthopedic surgeons and radiologists for monitoring and treatment if malignancy is detected.
