ADEM Patient Support is an online support group for patients, friends and families affected by ADEM (Acute Disseminated Encephalomyelitis). This online patient support community is powered by BensFriends.org, a network of patient support communities for rare diseases. Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
The National Institute of Health describes Acute Disseminated Encephalomyelitis as being characterized by a brief but widespread attack of inflammation in the brain and spinal cord that damages myelin – the protective covering of nerve fibers. ADEM often follows viral or bacterial infections, or less often, vaccination for measles, mumps, or rubella. The symptoms of Acute Disseminated Encephalomyelitis appear rapidly, beginning with encephalitis-like symptoms such as fever, fatigue, headache, nausea and vomiting, and in the most severe cases, seizures and coma. ADEM typically damages white matter (brain tissue that takes its name from the white color of myelin), leading to neurological symptoms such as visual loss (due to inflammation of the optic nerve) in one or both eyes, weakness even to the point of paralysis, and difficulty coordinating voluntary muscle movements (such as those used in walking).
Acute Disseminated Encephalomyelitis is sometimes misdiagnosed as a severe first attack of multiple sclerosis (MS), since the symptoms and the appearance of the white matter injury on brain imaging may be similar. However, ADEM has several features which differentiate it from MS. First, unlike MS patients, persons with Acute Disseminated Encephalomyelitis will have rapid onset of fever, a history of recent infection or immunization, and some degree of impairment of consciousness, perhaps even coma; these features are not typically seen in MS. Children are more likely than adults to have ADEM, whereas MS is a rare diagnosis in children. In addition, ADEM usually consists of a single episode or attack of widespread myelin damage, while MS features many attacks over the course of time.
Doctors will often use imaging techniques, such as MRI (magnetic resonance imaging), to search for old and new lesions (areas of damage) on the brain. The presence of older brain lesions on MRI suggest that the condition may be MS rather than Acute Disseminated Encephalomyelitis, since MS can cause brain lesions before symptoms become obvious. In rare situations, a brain biopsy may be necessary to differentiate between ADEM and some other diseases that involve inflammation and damage to myelin. (NIH retrieved November 2021.)
AcuteDisseminatedEncephalomyelitis.org is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices “should” be. We might inform your choices by sharing individual experiences and information developed by study as lay people. But AcuteDisseminatedEncephalomyelitis.org is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.
How is Ben’s Friends Different from Social Media and Other Support Sites?
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
We’re interested in you as a person, and in your struggles as a rare disease patient. But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe. Your information is never shared, and your activity never tracked by adware.
When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live. That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..
Ben’s Friends: Safe and Supportive.
And anonymous to keep it that way.
Why create an account?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
Click here to create an account and join.
Latest Discussions
- Welcome New Members!by rose on February 1, 2024
Warm welcome @Rita345 and @Pank! Thrilled to have you in our ADEM community. Here, each journey is unique, but together, we’re a strong family. Share, support, and find strength in our collective resilience. Your story enriches us all. Welcome aboard! 1 post – 1 participant Read full topic
- Looking for Your Stories!by Modsupport on January 9, 2024
@trust_level_0 Dear Acute Disseminated Encephalomyelitis Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we are planning a social […]
- The Ripple Effect: How ADEM Impacts Patients and their Loved Onesby BF_Writer on December 11, 2023
Sascha Gallardo – July 14, 2023 Acute Disseminated Encephalomyelitis (ADEM) is a rare disorder marked by severe swelling in the brain and spinal cord. It usually occurs after a bacterial or viral infection, commonly affecting the upper respiratory tract. The inflammation is thought to stem from an autoimmune reaction, not directly caused by the virus or bacteria. ADEM can affect individuals of […]
- 📢 Calling mothers of children with rare diseases of all agesby Modsupport on August 12, 2023
Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases together. share the community with other families who are affected. 70% of rare […]
- Let’s Communicate!by Lynn on July 18, 2023
Good afternoon, I’d like to start everyone talking for all of us. Has anyone made any improvement or changes to their ADEM that they’d like to share? Lynn 3 posts – 2 participants Read full topic
- 7 Things to Look for When Choosing a Doctorby BF_Writer on May 8, 2023
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s Friends, one of the things we always encourage our members to do is to advocate for their own health. […]
Feature Article
The Ripple Effect: How ADEM Impacts Patients and their Loved Ones
Acute Disseminated Encephalomyelitis has a significant and multifaceted impact on patients, affecting various aspects of their lives. The physical consequences, such as paralysis, vision issues, and cognitive impairments, can severely limit their daily functioning and independence. The emotional challenges they face, including frustration, anger, depression, and aggression, further compound the complexity of their experience.
Additionally, families of individuals with Acute Disseminated Encephalomyelitis (ADEM) encounter substantial challenges, including financial burdens stemming from medical expenses and potential disruptions to their routines. The emotional toll on caregivers and family members is profound and necessitates support and understanding.
By fostering awareness and understanding of these effects, we can cultivate empathy, provide better support, and improve the overall care and quality of life for those impacted by ADEM.
Ben’s Friends has a free and safe online support community for patients affected by ADEM as well as their caregivers and family. Join our ADEM Patient Support Community so you can get in touch with people who truly understand what you’re going through.
