Ben's Friends Fundraiser

Hi Past & Present Ben's Friends Supporters! 
We really need your help. Our annual Ben's Friends fundraiser is way below goal. So far we are at $14k with many generous donations. But at the very least we need to be at $25k, and ideally at $35k or above. 
We're probably the most efficient non profit in the world, helping 125,000 patients per month with a budget of $3k per month. But even we can't survive on $14k. 

Please donate at our super easy Donation Page at Ben's Friends . A $5 donation will make a big donation. Everything is tax deductible!

We realize most members aren't in a position to donate. Those members can help by spreading the word about the fundraiser on the communities and on Facebook. 

We need your help to keep Ben's Friends alive and going strong!
We really need your help! Please donate, even if it's $5, that will really help.

Thanks!
Scott
(Co-Founder of Ben's Friend)

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body.

Ehlers-Danlos Syndrome is caused by a defect in the synthesis of collagen, specifically mutations in the COL5A and COL3A genes. The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. 

Moderator

Family and EDS

Does anyone else struggle with their family and their lack of support throughout your journey?   For myself, my mother makes it seem like I am a hypochondriac.  Like I have gone to the doctors and convinced them of all of the things that are wrong with me.  The funny things is, I have only complained of simple things, like a common cold or something like that.  Everything else, I have been told I have.  Plus, how do you make up aneurysms and AVM's?  Also, you don't get referred out to major…

Read more…
2 Replies · Reply by Kristin Conley on Friday

Head pain?

Hi everybody,Just looking for opinions. I have EDS-Hypermobility. In the past couple weeks I have had off and on pain on the top of my head. Almost like someone is pounding a hammer on my head. No neurological symptoms.I am a bit spooked.Any thoughts????

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1 Reply · Reply by Michaela Jan 4

Scalp Problem

I don't know why this embarasses me slightly but this is the place to ask: Does anybody else get scalp lesions? I realize I am lucky to have hair at all in my 50s, and the lesions don't show, but They do annoy. Anybody else in here?

Read more…
7 Replies · Reply by Kristin Conley 16 hours ago

Help Patients Just Like You By Joining Our Team Fundraising Campaign

ANNOUNCING OUR ANNUAL BENS FRIENDS FUNDRAISER!! All of our patient communities are banding together to raise funds by creating their own fundraising pages and engaging their friends, family, and community to support Ben's Friends. The money will help Ben’s Friends migrate to a new platform so we can create more communities. REMEMBER WHAT IT WAS LIKE TO BE ALONE?  THEN FINDING OTHERS LIKE YOU? Hello, it’s Ben here. I hope this message finds you well. You remember that feeling you had when you…

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0 Replies

Ben's Friends Member Survey

Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

Mobile App and E-Book Available for Download

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Activity

Nicola left a comment for Nicola
"Many thanks Scott...I was not sure if I would be welcomed as it is my little Puppy that is affected…"
1 hour ago
scott o left a comment for Nicola
"big welcome Nicola!"
7 hours ago
Nicola left a comment for Nicola
"The Zebra is the Worldwide Emblem for EDS in Dogs"
8 hours ago
Nicola updated their profile photo
8 hours ago
Nicola updated their profile
8 hours ago
Nicola is now a member of Ehlers-Danlos Syndrome Online Support Group
16 hours ago
Kristin Conley replied to Jay Jones's discussion Scalp Problem
"I have occipital neuralgia, which is damage to the occipital nerve. This is what they have said ca…"
16 hours ago
Kristin Conley replied to Kristin Conley's discussion Family and EDS
"Dawn, thank you so much for responding. I am sorry that you have to endure similar circumstances.…"
Friday
Dawn Laughlin replied to Kristin Conley's discussion Family and EDS
"I just read this and wow. I don't understand moms who act that way and i am so sorry for all you h…"
Wednesday
Dawn Laughlin is now a member of PETS
Wednesday
Dawn Laughlin replied to SK's discussion Tell me something good!
"Hello - I am new here and just found this discussion. My good news is that I finally got a diagnos…"
Wednesday
Dawn Laughlin updated their profile
Wednesday
More…

Blog

Welcome!

You're not alone.

If your family has been affected by EDS, consider Ehlers-Danlos Syndrome Support Network your second home.

NOW....GET STARTED:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Follow us on Twitter
6. Fan Us on Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide

Concerned About Privacy

Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.

To change username, click here. 

Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

Community Moderators

Michaela
Kristin
DancerMom
SK
scott o

Keep it nice & clean

 Please be kind and use appropriate language

1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
5. No sharing of members' posts to other sites without their express permission.
6. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted. 
 
Thanks for your cooperation.
 

 

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

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