All Blog Posts (25)

Dear Friends and Family of LifewithMultipleMyeloma,

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…

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.

The annual Walk for Lupus event organized by the Lupus Foundation of America was announced on these posts. Interesting to view some of the pictures from the nationwide event.

http://www.washingtonpost.com/local/teacher-to-help-raise-funds-for-lupus-foundation/2012/04/17/gIQAnzuSQT_story.html…

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…

I came across an inquiry from a reporter named Ginny Graves of MORE magazine. She'e looking for women in their 40s and 50s who were prescribed an antidepressant for various illnesses to interview for a story. Interested in hearing both positive and negative experiences.

Those who would lke to make themselves available may email her on the link below.

Email: …

Dear Friends and Family of LifewithMultipleMyeloma,

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…

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 LifewithMultipleMyeloma,

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 …

Hello all,

  My mom was wondering if her excessive thirst and dry mouth at night is a cause from the chemo medicine?? She gets it via shots twice a week for 2 weeks and then a week off. She drinks a whole water bottle at night. Her lips are really chapped, and she drinks a lot of water during the day. Its a consistent thirst. thanks for any advice!!!!

~andrea~

Dear Friends and Family of LifeWithMultipleMyeloma,

As you well know, living with Myeloma 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…

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…

Multiple Myeloma is one difficult diseases to deal with. However, you need not to battle with it alone. There are just so many people who are willing to take it with you. Ann Guarino, a resident of Glen Rock also has a husband who suffers from Multiple Myeloma, almost 8 years from now. Instead of faltering and backing off, she credits her husband, Vito, as an inspiration to move life.

For the Multiple Myeloma Research Foundation (MMRF), which aims to help patients heal from…

  I am happy and wanna share to you guys how i feel when my Mom was diagnosed to have this Multiple Myeloma just this January 19, 2012.. still I am on stage of Denial.. She walks like 85 years old though she is just 50 years old.. She have bone pain, and she felt numbness from her waist to lower extremities.. and was undergone MRI and her Hematologist reffered us to a Neuro-Oncologist..... I feel so Broken... I am from Philippines and I know…

LifeWithMultipleMyeloma 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 them.

We’re…

LifeWithMultipleMyeloma Members, Friends and Family,

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

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IN THIS…