Welcome Members!

Welcome to Living with Epidermolysis Bullosa Patient 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 Epidermolysis bullosa. Epidermolysis bullosa (ep-ih-dur-MOL-uh-sis buhl-LOE-sah) is a group of rare diseases that cause fragile, blistering skin. The blisters may appear in response to minor injury, even from heat, rubbing, scratching or adhesive tape. In severe cases, the blisters may occur inside the body, such as the lining of the mouth or the stomach.

Most types of epidermolysis bullosa are inherited. The condition usually shows up in infancy or early childhood. Some people don’t develop signs and symptoms until adolescence or early adulthood.

Epidermolysis bullosa has no cure, though mild forms may improve with age. Treatment focuses on caring for blisters and preventing new ones. Epidermolysis bullosa signs and symptoms vary depending on type. They include:

  • Fragile skin that blisters easily, especially on the hands and feet
  • Nails that are thick or don’t form
  • Blisters inside the mouth and throat
  • Thickened skin on the palms and soles of the feet
  • Scalp blistering, scarring and hair loss (scarring alopecia)
  • Thin-appearing skin (atrophic scarring)
  • Tiny white skin bumps or pimples (milia)
  • Dental problems, such as tooth decay from poorly formed enamel
  • Difficulty swallowing (dysphagia)
  • Itchy, painful skin

Living with Epidermolysis Bullosa 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.

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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

  • Our New Ben’s Friends Classroom
    by BF_Writer on January 26, 2023

    Clasina Field – November 1, 2019 You must be wondering what Seenie has been doing these days. Well, I’ve been building our Google Classrooms and library where our Moderators and Interns will be able to learn the skills and tricks of the Moderator Trade. Right now, I’m about to stock our library with reading material and things like Slide Guides. It will all be set up for independent learning, at your convenience. Of course, there are no […]

  • Spotlight on Our Board Member: John Stamler
    by BF_Writer on January 17, 2023

    Ben Munoz – November 9, 2019 John Stamler, Ben’s Friends’ treasurer and a rare disease survivor himself, had a conversation with Garry Turner in the Episode 81 of Value through Vulnerability podcast. John shared his inspiring work as a mentor to startups and his admiration for the entrepreneurs he works with who are so passionate about what they believe in. He also talked about his experiences related to a rare heart defect which […]

  • Ben’s Friends Members to Benefit from Cutting-edge Health Data Management Tool
    by BF_Writer on January 17, 2023

    Sascha Gallardo – January 14, 2020 Members of Ben’s Friends patient communities can soon take advantage of a state-of-the-art technology that will enable them to manage their medical information in a secure multilingual digital tool, give them access to an online referral service for physicians and clinics, and let them participate in research that will benefit the rare disease community. Ben’s Friends is partnering with Backpack Health to […]

  • Ben’s Friends Brings Learning About Patient Support to the Next Level
    by BF_Writer on January 6, 2023

    Sascha Gallardo – January 20, 2020 Ben’s Friends created a user-friendly online training facility that makes learning about providing support to patients simple and easy. Dubbed as Ben’s Friends U or Ben’s Friends University, it makes use of Google Classroom to create one virtual classroom for Moderators and another one for the Interns. Using this G-suite tool, the Ben’s Friends team is able to build a “library” of links to […]

  • Spotlight on our Member: John aka Jokhere from Living with Polyneuropathy Community
    by BF_Writer on December 28, 2022

    Sascha Gallardo – March 7, 2020 Polyneuropathy is often characterised by numbness, tingling sensation, burning pain and even paralysis of the hands and feet which can later on progress to the other parts of the body such as the arms and legs. This condition can be either acute, which appears suddenly but resolves slowly, or chronic which progresses gradually. It has different classifications such as the Guillain-barré Syndrome (GBS), Chronic […]