Support groups allow members to share their experiences and how they cope with the condition. Talking to others diagnosed with TM can reduce fear and anxiety while also being a good source of information.
What is a Transverse Myelitis support group, and why should you join one?
A support group is a collection of people with similar interests or experiences. A Transverse Myelitis support group will include people who have been diagnosed or have experience with dealing with the condition.
Those treated for Transverse Myelitis may find that healthcare providers may not be able to give enough support emotionally. However, you may be able to receive this through support groups that include people who entirely relate to your condition.
Being diagnosed with a rare condition such as Transverse Myelitis can be scary. However, there are many support groups you can turn to for help and advice. The Transverse Myelitis support groups listed may provide a sense of relief that you are not the only person dealing with this condition.
These support groups are for ideas, support, and advice. Patients should not use them over a qualified healthcare provider for treatment. Before changing your medication or treatment, please talk to your medical provider.
Transverse Myelitis Folks (Blue Crew)
Transverse Myelitis Folks (Blue Crew) is a Facebook support group with over 5,700 members at the time of writing. That makes this support group one of the biggest ones on the internet.
This support group includes people with TM, Longitudinally Extensive Transverse Myelitis (LETM), and Acute Disseminated Encephalomyelitis (ADEM). Those with conditions such as Neuro Myelitis Optica (NMO), Lupus, Rheumatoid Arthritis, and other conditions are also welcome. Family members and caregivers who want to learn more about the conditions above are also encouraged to join.
The Files section of this group is a compilation of professional advice, such as published case files and articles from experts in the medical field. The information here may be beneficial to living/recovering from Transverse Myelitis. However, it is essential that you do not take these as medical recommendations.
This group contains discussions on various topics, from dealing with symptoms to questions about treatment options. Due to the large member count, I'm sure there will be people who can answer any questions you have.
People Living with Transverse Myelitis
People living with Transverse Myelitis is a Facebook support group specifically for those diagnosed with Transverse Myelitis.
This group has 2,300 members who are all diagnosed and living with TM. You must be diagnosed with Transverse Myelitis or similar neurological disorders to join the group. Individuals who do not have TM, such as caregivers and family, will not be able to enter.
While this may seem strange, this allows the group's discussions to be exclusive to those with the condition. Additionally, fundraisers and similar posts are not allowed to ensure the group can handle these posts. However, this means that all the group discussion is solely about Transverse Myelitis.
Suppose you're looking for one group where you can connect and talk to only those diagnosed with neurological conditions. In that case, this one is right for you.
Transverse Myelitis Coalition
Transverse Myelitis Coalition is a Facebook support group created to provide a community of support and create awareness for TM patients and their families.
The central aspect of this group is that it is a public Facebook group. You can be accepted into the group to view, post, and comment on discussions. Be aware of this when posting your issues with TM in this group.
The group has over 4,100 members, and posts often include questions on symptom management, motivational images & quotes, and research studies involving TM. Due to having many members and this group being public, you will likely get many responses if you have a question about your condition.
Overall, this group covers the critical bases of what to expect from a Transverse Myelitis support group. Remember that this group is public, and anyone on Facebook can view anything.
The NMO Clinic
The NMO Clinic is a Facebook support group that allows users to share and learn about various disorders. Although only NMO is mentioned in the name, MOG, TM, and those with related conditions are also welcome.
The admins of this group include Dr. Michael Levy, a neurologist who is one of the leading researchers into rare neurological conditions.
Due to this, I expect to see publications from foundations and non-profit organisations popping up in the group. Additionally, various discussions in the group included which treatment members were taking, advice for symptom management, and motivational stories involving people battling neurological conditions.
The group also appears to be very active if this is a good fit for you to join and connect with others.
Transverse Myelitis Society
The Transverse Myelitis Society group is a support group for those with TM, ADEM, and NMO in the United Kingdom. This group belongs to a charity with the same name based in the UK. Their website is www.Myelitis.org.uk.
This support group has over 5,000 members and is one of the TM Society's primary ways of communicating with its members. Even if you are not a member of the TM Society, you can still join the support group.
The main discussion points in this group are about symptom management, care recommendations in the UK, and announcements from the charity. If you're looking for a Transverse Myelitis support group and you're from the UK, this one is helpful.
Women with NMO/MOG/TM
The Women with NMO/MOG/TM is a Facebook support group specifically for women with NMO, MOG Antibody Disease, or Transverse Myelitis.
This group was created so that women have a group to talk about topics related to women. Women may feel uncomfortable sharing their issues in smaller groups so this one may be more suitable.
I cannot give any more information about this group (I don't believe they would let me in!). If you are a woman with Transverse Myelitis looking to have conversations with others, this group will benefit you.
Parents of Children with TM, ADEM, NMOSD & ON in Europe
Parents of Children with TM, ADEM, NMOSD & ON in Europe is a Facebook group specifically for those with children diagnosed with a neurological condition. While the support group name mentions Europe, I think that outside of Europe would likely benefit from it too.
Caring for your child with a rare neurological condition may be difficult. However, the members of this group can assist you. Whether you have questions about physical expectations, the treatment you are considering, or if you need somewhere to vent, this group can help.
The advice given in this group should not be a replacement for a healthcare professional. Please speak to your healthcare providers before changing your child's treatment. It is also worth mentioning that fundraisers are not allowed in the group.
If you want to connect with others with a child with a neurological condition, this group is the one for you.
Southeast Asian NMO/MOG/TM Community
If you are from or living in a South East Asian country, then this group will be good for you. Southeast Asian NMO/MOG/TM Community is a Facebook group specifically for those from SEA countries such as Bangladesh, Bhutan, India, Myanmar, Nepal, Pakistan, and Sri Lanka.
While the group is still relatively new at the time of writing, its member count is growing fast. This group could be relevant to you if you live in SEA with Transverse Myelitis.
Texas NMO/MOG/TM Group
For those with Transverse Myelitis residing in Texas, the Texas NMO/MOG/TM Group could be helpful to you.
This Transverse Myelitis support group is for those diagnosed with NMO, MOGAD, or TM in Texas. If you're residing in the state, this could be an excellent opportunity to connect with others in your area.
Are you looking for healthcare recommendations or support in the Texas area? This group is likely to be the one for you.
Do you need to add your Transverse Myelitis support group to this list?
If your support group is not included on the list above, please get in touch with us to have it added to this page.