by Scott

October 24, 2020

Transverse Myelitis Support Group

What is a Transverse Myelitis support group and why you might want to join one?

A support group is a collection of people who share similar interests or experiences. A Transverse Myelitis support group will include people who have been diagnosed or have experience with dealing with the condition. 


Support groups allows for members to share their experiences and how they cope with the condition. This also can reduce fear and anxiety whilst being a good source of information.


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 who include people who fully relate to your condition.  


Being diagnosed with a rare condition such as Transverse Myelitis can be scary. However, there any many support groups where 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. 

 

Please note that these support groups are for ideas, support and advice. They should not be used over a qualified healthcare provider for treatment. Please talk to your your medical provider before making changes to your medication or treatment.

Transverse Myelitis Folks Support Group

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 groups includes people with TM, Longitudinally Extensive Transverse Myelitis (LETM), 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 care givers 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. This includes 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 important that you do not take these as medical recommendations.

Discussions on various topics from dealing with symptoms, advice when dealing with healthcare professionals and 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. In order to join the group, you must be diagnosed with Transverse Myelitis or similar neurological disorders. Individuals who do not have TM such as caregivers and family will not be able to join and pointed to other support groups who will admit them.

Whilst this may seem strange, this allows the group’s discussions to be exclusively from those with the condition. You can be assured advice on this group is from someone who is/has experienced living with TM.

Additionally, fundraisers and similar posts are not allowed. This is to avoid the group being overwhelmed with these types of posts. However, this means that all the discussion in the groups is solely about Transverse Myelitis.  

If you're looking for the one group where you can connect and talk to only those diagnosed with neurological conditions then 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 main aspect of this group is that it is a public Facebook group. This means you do not have to be accepted into the group to view, post and comment on discussions. Be aware of this when posting your own personal 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 the large number of members and being a public group, you are likely to get many responses if you had a question about your condition.

Overall, this group seems to cover all of the key bases of what to expect from a Transverse Myelitis support group. Just remember that this group is public and anything shared here can be viewed by anyone on Facebook.

The NMO Clinic Support GroupLogo

The NMO Clinic 

The NMO Clinic is a Facebook support group which allows users to share and learn about a variety of disorders. Although only NMO is mentioned in the name, MOG, TM and those with related disorders 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. He is joined by Andrea Mitchell who is the director of Blind Resources at The MOG Project, a non-profit organisation which supports research into MOG Antibody Disease.

Due to this, expect to see publications from the foundations and non-profit organisations popping up in the group. Additionally, various discussions in the group including which treatment members are taking, advice for symptom management and motivational stories involving people battling neurological conditions.

The group itself also appear to be very active. If this sounds like a good fit for you go join and start connecting with others in the group.

Transverse Myelitis Society Support Group Logo

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 Society’s main ways of communicating with its members. Even if you are not a member of the Society you are still able to 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 then this one could be helpful. It also may be worth looking at the Transverse Myelitis Society’s website for more resources.

Women with NMO MOG TM Support Group Logo

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 not feel comfortable sharing their issues in larger groups and 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 then this group would likely 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. Whilst the support group name mentions Europe, I think those outside of Europe would likely benefit from it.

Having to care for your child when they have a rare neurological condition may be difficult. However, the members of this group would likely be able to assist you. Whether its questions about physical expectations, treatment you are considering or if you need somewhere to vent then 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 making a change to your child’s treatment. It is also worth mentioning that fundraisers are not allowed in the group.

If you’re looking to connect with others who have a child with a neurological condition then this group is the one for you.

South East Asian Community Logo

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.


Whilst the group is still relatively new at the time of writing, it member count is growing fast.  If you are currently living in SEA with Transverse Myelitis then this group could be relevant to you. 

Texas NMO MOG TM Group Logo

Texas NMO/MOG/TM Group

For those with Transverse Myelitis residing in Texas, the Texas NMO/MOG/TM Group could be useful to you. 


This Transverse Myelitis support group is based in Texas. If you're residing in the state then this could be a good opportunity for you to connect with others in your area.


Looking for healthcare recommendations or support in the Texas area? This group is likely to be the one for you. 


Is your Transverse Myelitis support group not on this list?

If your support group is not shown on the list above, please contact us to have it added to this page. 


About the author

Scott

Scott was diagnosed with Transverse Myelitis (TM) in March 2020 caused by MOG Antibody Disease (MOGAD). He founded MyMyelitis in July 2020 to raise awareness of TM, MOGAD and similar neurological conditions to help others with their recovery.

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