Welcome Members

Welcome to Adrenoleukodystrophy 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 Adrenoleukodystrophy. AdrenoleukodystrophySupport.org is a dedicated patient-to-patient support community for families affected by Adrenoleukodystrophy. Adrenoleukodystrophy (ALD) is a rare, genetic disorder that leads to brain damage and failure of the adrenal glands.

Although the NIH’s Genetic and Rare Diseases Information Center  lists several forms of Adrenoleukodystrophy, one of the more common types is X-linked Adrenoleukodystrophy (X-ALD).  X-ALD is a genetic disease that affects the nervous system and the adrenal glands (small glands located on top of each kidney). People with this disease often have progressive loss of the fatty covering (myelin) that surrounds the nerves in the brain and spinal cord. They may also have a shortage of certain hormones that is caused by damage to the outer layer of the adrenal glands (adrenal cortex). This is called adrenocortical insufficiency, or Addison disease.[1] There are three forms of X-ALD: a childhood cerebral form, an adrenomyeloneuropathy (AMN) type, and an adrenal-insufficiency-only-type. The disease primarily affects males.[1]

Other types include:

Adrenoleukodystrophy autosomal neonatal form

Adrenoleukodystrophy childhood cerebral form

Pseudoadrenoleukodystrophy

Neonatal Adrenoleukodystrophy

Pseudoneonatal Adrenoleukodystrophy

X-linked Cerebral Adrenoleukodystrophy

Ben’s Friends AdrenoleukodystrophySupport.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.

 

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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

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    by Bens_Friends on June 13, 2022

    Father’s Day. Graduations. All Summer Needs. Do some “feel-good” shopping and change a rare disease patient’s life today. Go to smile.amazon.com Click “Get started” Once signed in, you […]

  • Heads up! Happening soon
    by ModSupport on April 4, 2022

    One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of adrenoleukodystrophysupport.org and there you’ll be … in a completely different place! Well, not […]

  • A Word about Covid Vaccines
    by 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. […]

  • Fwd: Holiday Help and Best Wishes
    by 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 […]

  • Holiday Help and Best Wishes
    by 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 […]

  • Screen names - Ben's Friends values your privacy
    by ModSupport on December 6, 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 […]