All Blog Posts (40)

Dear Friends and Family of LivingWithGPN,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead!

Here are some highlights:

Total members for all communities at the end…

My styloid process and tonsils have been removed and no relief from the pain.  It is actually worse. Unfortunately, it doesn't seem as though it was Eagles Syndrome.  Back to my GPN diagnosis.  UGH!  I am starting a stronger pain medicine this week.  It is time released Oxycontin.  I am a little scared of the drug.  Although I have been on pain medication since August of 2010, I have tolerated it well.  But, it's not enough to take the pain away for a few hours.  Thought of doubling up but I…

When Sickness Strikes the Family–

Children are the most affected when sickness hits the family,…

Would you like to share the challenges you face while dealing with a rare disease? Artist and TV personality Nick Cannon would like to hear about it.

Sign up on the link below and share your story. 

http://www.nickcannon.com/post/share-your-ncredible-health-hustle

Mention your illness and how this community has helped you cope with it.

Do you have a story to share on the following topic? If so, send an email to Patrick Hester by clicking on the link below.

Summary: Are You Wondering How to Get The Most Out of Your Health Screening? 

Email to: query-23di@helpareporter.net 

Media…

Dear Friends and Family of LivingwithGPN,

April – the smell of spring in the air!

Spring brings a lot of positive notes: it signals growth and rebirth. As Ben’s Friends, our patient support group is growing real fast. As a member community, you’ll see stats on how we contributed to this growth as reported below. Be assured that no matter how small the contribution may be, it adds up and it is very much appreciated!

Our presence is being felt…

In the  midst of the buzz about Rare Disease Day throughout February, I came across JC Colyer on Twitter. He has been diagnosed with Ataxia.  Curious to learn about this rare condition, I asked him if he would like to talk about Ataxia so that we can learn about it. Graciously, he agreed to contribute the post below.  Not only did he provide details about Ataxia, but he provided a key ingredient to coping with any major challenges in life: adapting your lifestyle!  Thank you,…

A member from a fellow community asked: What to do when depression sets in? You can almost imagine the outpouring of support from everyone.

It dawned on me: What advise can we offer a family faced with a rare disease? The challenge of caring for rare disease patients in the family can be a daunting one.

I found that the issue is manifold. I would like…

Dear Friends and Family of LivingWithGPN,

February brought us great strides as our various communities of rare disease support groups gathered the largest number of new memberships of all time! The volume of blog posts, comments and discussions also increased. We at Ben’s Friends commend you all for your active support of our communities!

IN THIS …

Well folks, hello, and my apologies for my extended absence. God, I dont even know where to start over the last few months, it has been......... well; rough. I dont even know when to start, I've had I dont know how many trips from one end of the country to the other, one infection and trauma after another and now I'm pretty well exhausted and frazzled and about at the end of my tether.

Lemme see, last july, had a family reunion at home with a bunch of birthdays, went up ( 13…

Dear Friends and Family of LivingwithGPN,

As you well know, living with GPN can be very challenging not only for you but to your families as well. This organization was built with a view to helping you and your families to live up to this challenge by linking you up with people who share similar experiences and have succeeded in maintaining a positive outlook!

Explore more how our community had helped members face the…

I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.

It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called…

I am to the point that I have given up on the drugs.  I would rather deal with the pain devil than the drug devil.  Seemed like it was doing more harm than good.  I have to work as I am the bread winner.  I have no choice but to be clear in the head and fight through the pain.  Do you have the pain to the touch in the center of the throat?

I read someone on here was on trileptal and zinc with a successful outcome and now I cannot find the post with the doses. I have a new pain dr. and we have not had much luck with anything so far and I have tried most of what he has recommended (lyrica; nuerontin; hydrocodone; etc.) but not this combo. Could someone respond to this please? I am having a hard time just leaving the house because of the pain. Thank you.

LivingWithGPN Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like…

Glossopharyngeal Neuralgia (GPN) Surviors, Friends and Family,

We hope this message finds you well with high spirits and inner joy. We’re happy to inform you that our Glossopharyngeal Neuralgia (GPN) community continuously been growing. And as always, we’re here to give strength and support.

 …