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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.
The MHE Learning System (MHELS) is committed to improving the lives of people with MHE through collaboration and shared learning.
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