Care Team for People with MHE
Care Team for People with MHE
Care Team for People with MHE
People with MHE may benefit from a team of different healthcare providers.
People with MHE may benefit from a team of different healthcare providers.
People with MHE may benefit from a team of different healthcare providers.
Care Team for People with MHE
Care Team for People with MHE
People with MHE may benefit from a multidisciplinary care team. Not every person with MHE will need every specialist.
The care team evolves over time based on age, symptoms, and individual needs; work with your doctor to find the right team for your individual needs.
People with MHE may benefit from a multidisciplinary care team. Not every person with MHE will need every specialist.
The care team evolves over time based on age, symptoms, and individual needs; work with your doctor to find the right team for your individual needs.
Orthopedic Surgeon
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.
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
Genetic Counselor
Provides genetic counseling for people and families with MHE.
Completes genetic testing to confirm diagnosis and identifies the specific gene mutation (EXT1, EXT2).
Facilitates conversations about key considerations across the lifecycle, including family planning and the risk of passing MHE to future children.
Provides genetic counseling for people and families with MHE.
Completes genetic testing to confirm diagnosis and identifies the specific gene mutation (EXT1, EXT2).
Facilitates conversations about key considerations across the lifecycle, including family planning and the risk of passing MHE to future children.
Primary Care Physician (PCP)
Primary Care Physician (PCP)
Refers to specialists and oversees routine health management, including monitoring growth and development in pediatric patients.
Refers to specialists and oversees routine health management, including monitoring growth and development in pediatric patients.
Radiologist
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).
People with MHE do not usually interface with radiologists but you may receive a radiology report with imaging (x-ray, CT, MRI).
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).
People with MHE do not usually interface with radiologists but you may receive a radiology report with imaging (x-ray, CT, MRI).
Physical Therapist (PT)
Physical Therapist (PT)
Helps 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.
Helps 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.
Pain Management (if needed)
Pain Management (if needed)
Assists in managing chronic pain; uses a combination of medications, physical therapies, and possibly interventional procedures to alleviate pain.
Assists in managing chronic pain; uses a combination of medications, physical therapies, and possibly interventional procedures to alleviate pain.
Psychologist or Psychiatrist (if needed)
Psychologist or Psychiatrist (if needed)
Provides mental health support for people who may experience emotional or psychological stress related to chronic pain or the challenges of living with a rare disease.
Offers counseling and coping strategies for anxiety, depression, or social difficulties.
Provides mental health support for people who may experience emotional or psychological stress related to chronic pain or the challenges of living with a rare disease.
Offers counseling and coping strategies for anxiety, depression, or social difficulties.
Care Manager or Social Worker (if needed)
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, walkers post op).
Helps coordinate care across multiple specialists and addresses any social or practical challenges the patient may face.
Provides support for navigating the healthcare system and accessing resources like financial aid, durable medical equipment (ex: wheelchairs, walkers post op).
Helps coordinate care across multiple specialists and addresses any social or practical challenges the patient may face.
Orthotist (if needed)
Orthotist (if needed)
May design custom orthotics or braces to help correct skeletal deformities, assist with mobility, or provide support for weakened joints.
May design custom orthotics or braces to help correct skeletal deformities, assist with mobility, or provide support for weakened joints.
Oncologist (if needed)
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.
Some orthopedic surgeons who care for MHE are also oncologists (or orthopedic oncologists) who specialize in caring for malignant and benign bone tumors.
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.
Some orthopedic surgeons who care for MHE are also oncologists (or orthopedic oncologists) who specialize in caring for malignant and benign bone tumors.