Thymidine kinase 2 deficiency (TK2d) is so rare that most people have never heard of it — which makes finding support all the more more challenging. However, wider support groups for genetic mitochondrial diseases are available. These groups can offer practical advice and emotional support from a community of people who are living with similar diseases.
The benefits of support groups for mitochondrial disease
Living with a rare disease can be overwhelming at times, causing feelings of isolation, emotional stress and powerlessness. A lack of information and limited treatment options can be frustrating. If you don’t know anyone else who has experienced a rare disease, it may feel like no one understands what you’re going through as a patient or as a caregiver.
The support of friends and loved ones may help, but talking with someone who relates firsthand to your situation can provide a different level of understanding and advice.
A mitochondrial disease support group can connect you with others who are on the same journey. Other patients and family members may have practical advice on:
- Managing nutrition.
- Exercise.
- Navigating symptoms.
- Managing daily life.
- Supporting energy production.
- What to expect with disease progression.
They may also provide recommendations for:
- Finding healthcare professionals with experience in mitochondrial diseases.
- Navigating supportive care options.
Learn more about TK2d treatment and care
How to find a support group for mitochondrial disease
To get started, ask your healthcare team to recommend mitochondrial disease support groups in the area or online.
Organizations that may be able to connect you with support groups include:
- United Mitochondrial Disease Foundation (UMDF), a nonprofit dedicated to providing education and support to those with mitochondrial disorders. In particular, they offer a network of support ambassadors, online support groups and virtual events.
- MitoAction, a mitochondrial disease-specific nonprofit that facilitates support calls, playdates for children with mitochondrial diseases, support meetings and gatherings.
- Muscular Dystrophy Association (MDA), a large nonprofit dedicated to people living with muscular dystrophy and related neuromuscular diseases, including mitochondrial myopathies like TK2d. The MDA can help connect patients and families with peers and community support groups.
- International Mito Patients (IMP), an organization that helps foster international mitochondrial patient advocacy. IMP facilitates an online support group and offers resources for those looking to start their own support group locally.
The U.K. National Health Service (NHS) also has a long list of useful links to national and international organizations committed to supporting and advocating for people and their families living with mitochondrial diseases.
Depending on your location, your interaction with a support group may be initially online, but this doesn’t change the impact of finding a community of people who are experiencing similar experiences, challenges and frustrations as you and your family.
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