Welcome to Living with ADEM Patient Support Community!
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.
This is an online support group for patients, friends and families affected by ADEM (Acute Disseminated Encephalomyelitis). The National Institute of Health describes ADEM 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 ADEM 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).
ADEM 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 ADEM 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 ADEM, 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?
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.
- Diagnosed in the 1990s, looking for recommendationsby Lead.Intern on January 14, 2022
Hello and Happy New Year to everyone in our community, Our newest member (and the first member of the year 2022) is @James72 , and he is really curious about his father’s ADEM, and possible treatment options. His father was diagnosed in the early 1990’s, and as he has developed various symptoms such as loss of balance and speech, he would like to know if there are any treatments out there to […]
- A Word about Covid Vaccinesby Bens_Friends on January 3, 2022
“Whether or not you choose to get vaccinated is a personal choice. Somehow, someway choice has become a political statement. Ben’s Friends Communities are for peer to peer support, not politics. While Covid is a concern of our membership, we are not social media. Anytime discussion veers to politics, religion, or off topic, that discussion will be moderate either moved to a private discussion […]
- Fwd: Holiday Help and Best Wishesby Bens_Friends on December 24, 2021
We know. It’s been another long, tiring, frustrating year. We hope you will have exactly the kind of holiday that you want and need. But we also know that the holiday season isn’t always the easiest time for our members. If you are feeling lonely, or you just need to touch base and talk, please remember that your Ben’s Friends community is there for you. Although your community may be very […]
- Holiday Help and Best Wishesby Bens_Friends on December 24, 2021
It’s been another long, tiring, frustrating year. And the holiday season isn’t always the easiest time for people. We hope you will have exactly the kind of holiday that you want and need. If you are feeling lonely, or you just need to touch base and talk, please remember that your Ben’s Friends community is there for you. Although your community may be very quiet, the Ben’s Friends team […]
- Treatments for long term symptoms?by Lead.Intern on December 8, 2021
Hello everyone, @Tine is one of our newest members. After being diagnosed with encephalitis and myelitis after a viral infection, they are currently taking Prednisolone, Valganciclovir, and IVIG. However, they mention they are still looking for treatments for long term symptoms… We would greatly appreciate it if anyone can share any personal stories/suggestions for @Tine! We are all rooting for […]
- Screen names – Ben’s Friends values your privacyby Modsupport on December 7, 2021
Some of you may have noticed that your screen name now appears different. If you had your full name as your screen name, I changed it in order to better protect your privacy. If the shortened name is not to your liking, please private message me by clicking on the ModSupport icon and let me know what you would rather your name be, and I’ll change it. Sharon from ModSupport @trust_level_0 […]