Bumpy Bones Locksport

About My Condition: Multiple Hereditary Exostoses (MHE)

Multiple Hereditary Exostoses (MHE), also known as Multiple Osteochondromas, is a rare genetic disorder that causes benign bone growths called exostoses (or osteochondromas) to form near the growth plates of bones. These growths can appear on various bones throughout the body, often during childhood and adolescence, and may lead to:

• Pain and discomfort due to pressure on muscles, tendons, or nerves
• Restricted movement or joint deformities
• Differences in limb length
• In some cases, complications such as nerve compression or vascular issues

MHE is a really difficult condition to live with, especially as it affects multiple joints and can lead to chronic pain and mobility challenges. Many individuals with MHE undergo multiple surgeries throughout their lives to remove problematic growths and address complications. It also does not impact people equally; some may experience more severe symptoms than others. Some only have a couple of growths, while others may have many. Some have more pain than others. Some individuals may find it more challenging to engage in physical activities or hobbies they love, while others may adapt in different ways.

MHE is hereditary, meaning it is passed down through families, but not always, and is typically caused by mutations in the EXT1 or EXT2 genes. While the condition is non-cancerous in most cases, there is a small risk of malignant transformation later in life, so ongoing monitoring is important.

Living with MHE

Living with MHE requires a multifaceted approach to manage symptoms and maintain quality of life. Here are some key aspects:

• Regular Medical Care: Ongoing check-ups with healthcare providers familiar with MHE are crucial for monitoring growths and addressing any complications.
• Pain Management: Developing a personalized pain management plan, which may include medication, physical therapy, and alternative therapies, can help alleviate discomfort. Many people take different approaches to pain management, and what works for one person may not work for another.
• Surgical Interventions: In some cases, surgery may be necessary to remove problematic growths or correct deformities. The timing and extent of surgery depend on individual circumstances.
• Physical Activity: Engaging in low-impact exercises can improve mobility and strength. It's important to find activities that are enjoyable and feasible.
• Support Networks: Connecting with support groups or communities of individuals with MHE can provide valuable emotional support and practical advice.

Resources for People with Disabilities

For those living with MHE or other disabilities, there are numerous resources available to provide support, information, and community connections. Here are some recommended resources:

• MHE Coalition - A dedicated organization providing resources, support, and advocacy for individuals with MHE and their families.
• National Organization for Rare Disorders (NORD) - Offers information on rare diseases, including MHE, and connects patients with resources and support networks.
• Disability Rights Education & Defense Fund (DREDF) - Provides legal advocacy and resources for individuals with disabilities.
• AbleData - A comprehensive database of assistive technology products and resources for people with disabilities.
• Disability.gov - A government resource offering information on disability programs, services, and support.
• American Disabilities Act - A civil rights law that prohibits discrimination based on disability.