Dear Friends and Family of Amyloidosis,
“An informed patient is an empowered patient.”
These buzzwords have been around for a while: journalists have shared their penny’s worth in the discussion, non-profits advocated it as part of patient rights, and even government and the academe have joined in the chorus line harping on its merits.
But no other people, I believe, can understand the power in those words than patients of rare diseases themselves. You are the ones who have often groped for answers; you are the ones entrusting life to a health care team who are, at times, equally in the dark.
But, while trusted experts are certainly an essential part of your recovery, your role in your care is no less critical. So let me share how you can become a better informed patient and, therefore, an empowered patient.
Create an Environment of Trust
Talk about what matters to you. Ask questions. Share your beliefs and preferences. This will create an environment of openness and trust where information, ANY information, no matter how mundane or seemingly irrelevant, is welcome.
Write down what has been discussed and validate the information. Share your findings with your health care provider. Do it as often as you can.
- Health care providers — Doctors, therapists and nurses are the most responsible group for educating patients about their condition including available options for treatment, if any, and their advantages and pitfalls.
- Personal Research — To an extent possible, patients can further their education by researching information about their condition, share these with the health care providers and discuss the options candidly.
- Support Community — Patient communities such as what we have is a wellspring of experiences where people who “have been there, don that” can provide insight on your condition.
Working with a Team
Effective patient empowerment requires team effort. Your team consists of:
- Your Family — Take along a friend or family when you visit your health care provider. They can listen, take note, or remember information while you are busy with your doctor or nurse.
- Your Health Care Provider — Your care team’s responsibility is to provide education; yours is to make sure you understand the information.
- Fellow Patients — There is strength in numbers is not an understatement. Keep in constant touch with your support community. Add your voice for your community to be heard.
Ensure effective communication between you and your team. Assign a doctor or nurse as your health care coordinator. Keep a journal where you can write important points, write a list of medications and monitor effects, even record any questions that come to mind anytime and don’t forget to bring the list when you go visit your doctor.
Think about the benefits. Your confidence in the medicines and the procedures you are on grows. “If you don’t have a belief that something may work, you’re not going to do as well as when you have been involved in the decision making,” explained Dr. Joel Granick, a medical oncologist at Cancer Treatment Centers of America (CTCA) in Goodyear, Arizona. “Patients who are involved in choosing their treatment are more likely to believe that their plan will be effective.”
Patient empowerment also increases the degree of compliance with the treatment plan. Being involved in the decision making, even having ownership over it, you’ll understand the importance of your plan and be more likely to follow it.
What is also remarkable about patient empowerment is the impact it has on your care considering the relatively little effort required on your part: to be informed, all you have to do is ask!
How Ben’s Friends Promote Patient Empowerment
Our communities have never been stronger as we are now as you can see in the steadily increasing figures below. Your contributions to every discussion have brought about confidence to every member to ask, validate, and process information with health care providers. We continue to find partners in like minded organizations. The 2nd.MD and RareGenomics, for example provide youFREE access to expert information; Advocacy for Patients with Chronic Illnessesguides you as you navigate legal paths for your care; and, a steady stream of financial advise and support through GoFundMe, Friends of Treasure and The Disability Digest.
And with a wonderful team of community moderators hailed from among your ranks, you can be assured of care and support from people who really understand your situations.
IN THIS ISSUE
BEN'S FRIENDS HIGHLIGHTS OF THE MONTH
AMYLOIDOSIS COMMUNITY HIGHLIGHTS
Welcome New Members
I am both thankful and humbled for the trust you give to this community! Thank you for joining our family.
Being a new addition to our family, I would like you to keep yourself comfortable and make your presence felt early. Share us what you’ve been up to lately on the Blog page. Throw out what’s been bugging you on the Discussion Forum and pitch in to the discussions. We would love to see your pictures and videos so share them on the Media page. And if you are looking for information, use the Search feature to open a quick listing.
Again, WELCOME to the family!
BEN'S FRIENDS HIGHLIGHTS OF THE MONTH
Ben’s Friends and RareGenomics Podcasts
The first run of our podcast on genetic disorders with our partner, RareGenomics, was a resounding success! You can listen to a recording of this podcast here, plus some bonus material from Dr. Perlman as she answers more questions about ataxia!
You may also post suggestions and question for the next podcast by filling thisform!
Ben's Friends and Rare Genomics Podcast Interview Series
Ben's Friends Patient Communities and partner organization Rare Genomics Institute (RareGenomics) will hold an hour-long interview with genomics experts on October 4th at 7-8 pm EST / 4-5 pm PST/ UK Midnight-1 am BST. The series will discuss technological advances in the area of rare genetic disorders and will feature a forum where you can field questions.
Later, a transcript of the interview and a link for a replay of the interview will be published in this community.
More details on this announcement on this page: Ben's Friends and RareGenomics Interview Series.
Please make sure to register your interest and questions via this invitation link .
John and Corrine Run in Marathon 2012
John Raises Campaign for BensFriends.org
John is instrumental in the launching of our ASD Survivors and Living with VWDcommunities, and helps moderate these sites as well. In addition to moderating, John is focused on sponsorships, partnerships with corporates, hospitals, physicians and the financial side of Ben’s Friends.
John’s recent run in Amsterdam is part of a campaign to raise funds for Ben’s Friends. You may help in this campaign by donating here.
Ben’s Friends Tops Symplur Healthcare Social Media Analytics
Ben’s Friends has been a consistent leader in the Symplur Healthcare Social Mediasurveys on Top Influencers for #RareDiseases for the month of October, including number of mentions, Tweets and hashtag comments.
Milestone: Chiari Malformation Community Reaches 1500+ Members!
Milestone: Living with Ataxia Community Reaches 1000+ Members!
Why I love Ben’s Friends – The Ben’s Friends Spirit
Mary recalls how she personally met Cherie Mae (a school mate in the Philippines who happens to be a member of AVM Survivors) and the friendship that blossomed from the encounter—a real-world intimacy she calls Ben’s Friends Spirit.
Read her story and recall your own unique memories that endeared Ben’s Friends to you. Share your story today and tell the world how Ben’s Friends have changed your life.
AMYLOIDOSIS COMMUNITY HIGHLIGHTS
Featured Content: How to prepare and what to expect with chemo?
LindaH's friend Glenn suffered a stroke which complicates matters as he is also suffering from amyloidosis of the heart. Help her prepare Glenn for chemo by sharing what you know about the procedure.
Featured Member: Ray
Ray of Covington, KY brings a smile to everyone on the site as she shares the good news of her mother's 3 year bout with amyloidosis!
Picture of the Month
JC Colyer shares a beautiful picture-quote of a flock of birds scattered across the backdrop of the sky, with the sun barely penetrating the storm clouds, and a quote which teaches us to look at bad experiences from a different perspective.
Number of Members as of October 1,2012 : 41