Living with Polyneuropathy is an online patient support community that 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.
Polyneuropathy is nerve damage affecting both sides of the body, causing weakness, numbness, tingling, and burning pain. It starts in the hands and feet, may spread to the limbs, and can affect the autonomic nervous system.
It may be acute (appearing suddenly, progressing rapidly and resolving slowly) or chronic (emerging and developing gradually).
What Causes Polyneuropathy
A number of different disorders may cause polyneuropathy, including Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy(CIDP) and Charcot-Marie-Tooth (CMT) which are predominantly motor peripheral neuropathies. Although poly-neuropathy is common, it most often is the result of “something else”. Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Charcot-Marie-Tooth (CMT) are rare hereditary or autoimmune diseases.
Guillain-Barré syndrome (GBS) is a rare disorder where the immune system attacks peripheral nerves, causing weakness or severe paralysis. Fortunately, most people eventually recover from even the most severe cases of GBS. After recovery, some people will continue to have some degree of weakness.
Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder that involves progressive weakness and reduced senses in the arms and legs. It is caused by damage to the fat-based protective covering on nerves called the myelin sheath. Symptoms of CIDP are:
- Tingling or no feeling in fingers and toes
- Weakness of arms and legs
- Loss of deep tendon (muscle stretch) reflexes
- Fatigue or feeling tired
- Unusual feelings in the body
CIDP can happen at any age and in both genders but is more common in young adult men. CIDP is closely related to Guillain-Barré syndrome (in which the immune system mistakenly attacks the body) and is considered the long-term part of that disease.
Charcot-Marie-Tooth disease (CMT) is a disorder that damages peripheral nerves, disrupting signals between the brain, spinal cord, and body, including sensory information like touch. CMT also can directly affect the nerves that control the muscles.
LivingWithPolyneuropathy.org is a virtual peer-to-peer 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.
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.
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