Sascha Gallardo – July 1, 2022
The immune system is supposed to protect us by attacking bacteria and viruses. For people who have autoimmune diseases, however, their immune system attacks their own cells. This can cause a range of problems depending on the disease they have.
Autoimmune diseases have no cure. Patients usually rely on different forms of treatment and lifestyle changes for most of, if not their whole life.
Dealing with an autoimmune disease is definitely no easy task. This is especially true when they are also rare diseases. This means that not many people have it and very few people (even doctors) are familiar with them.
People dealing with rare diseases usually feel isolated and lonely. It’s not easy to find people who really understand what they are talking about. Being part of a community composed of people who are also affected by the same rare autoimmune disease that they have can make a huge difference.
At Ben’s Friends, we aim to provide a safe and supportive community for people affected by rare diseases. Below are some of the rare autoimmune diseases that Ben’s Friends has a community for and which patients can benefit from:
1. Addison’s Disease
This autoimmune disease is characterized by insufficient production of certain hormones such as cortisol and aldosterone due to a problem in the outer part of the adrenal gland. These hormones are essential in regulating different functions in the body.
Cortisol, for instance, is important for stress response, metabolism, and blood pressure regulation among others. Aldosterone, on the other hand, is important to regulate salt and water in the body.
Although each person’s experience is unique, the common symptoms of Addison’s include nausea, low blood pressure, digestion problems, muscle pain, fatigue, and depression.
Patients may have days when they feel fine but sometimes they need to just stay in bed because their symptoms are bad that day. But aside from the usual symptoms, patients may also experience Addisonian crisis which can be life-threatening. Some of the symptoms of Addisonian crisis or severe adrenal failure include extreme weakness, diarrhea and abdominal pain, low blood pressure, and delirium.
If you think you would benefit from our Living with Addison’s community, we invite you to sign up here.
2. Acute Disseminated Encephalomyelitis (ADEM)
ADEM is a rare condition that can affect anyone regardless of age. It is characterized by extensive swelling in the brain and spinal cord, usually following either a bacterial or viral infection in the upper respiratory tract.
Each patient’s experience may vary but common symptoms include fever, headache, nausea and vomiting, fatigue, and muscle weakness. Patients may also experience confusion, blurred vision, seizures, paralysis and even coma.
If you think you would benefit from our Living with ADEM community, we invite you to sign up here.
3. Myasthenia Gravis (MG)
Myasthenia Gravis is a rare autoimmune disorder where the immune system mistakenly attacks and destroys receptors in the muscles. This affects communication between the nerves and muscles which eventually causes weakness particularly of voluntary muscles.
The first symptoms of MG are drooping of either or both eyelids or weakness in throat and face muscles which affects speaking, chewing, and swallowing.
At present, there is no cure for MG but there are treatment options available. These include corticosteroids, immunosuppressants, intravenous immunoglobulin (IVIg) therapy, and plasmapheresis.
If you think you would benefit from our Living with Myasthenia Gravis community, we invite you to sign up here.
4. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
CIDP is a rare autoimmune disorder which is often characterized by progressive weakness in the arms, legs, hips, and shoulders due to damage in the fatty covering that protects the nerve. Patients may also experience numbness, fatigue, problems in reflexes, loss of balance, and difficulty swallowing.
Each case may be different, especially since CIDP has different variants and clinical presentations. With this, the treatment will be tailored to the specific needs of the patient.
Treatment may include corticosteroids, immunosuppressive medicines, plasma exchange, and intravenous immunoglobulin (IVIg) therapy. Getting treatment early is extremely necessary for better chances of controlling the worsening of symptoms.
If you think you would benefit from our Living with Polyneuropathy community, we invite you to sign up here.
Sarcoidosis is an inflammatory disease associated with the formation of granulomas in the affected part or parts of the body such as the lungs, skin, eyes, or heart.
The effects of sarcoidosis vary from person to person. Some people do not exhibit any symptoms and don’t require any treatment at all. Others would need some form of treatment for a period of time and then go through remission. Some people, however, experience severe symptoms and even suffer from organ damage.
Sarcoidosis symptoms depend on which organ is affected, but in general its usual symptoms include fatigue, weight loss, night sweats, and swollen lymph nodes.
If you think you would benefit from our Living with Sarcoidosis community, we invite you to sign up here.
Join a safe and supportive community
Dealing with a rare autoimmune disease can have a huge impact on the patient’s life. Joining a safe and supportive community, however, can provide a lot of benefits like finding tips on how to manage the disease, having someone to talk to, and even just knowing that they are not alone.
We invite anyone who could benefit from these communities. We hope that Ben’s Friends can change the lives of patients of rare autoimmune diseases as well as their families.