Have you recently been diagnosed with Amyloidosis? Wondering if joining a support group, whether online or in person, would be right for you?
When I was diagnosed with AL Amyloidosis, I thought that it wouldn’t be for me. It took me over a year to join. I had a picture in my mind of what it would be like. I envisioned a group of people gathered together to complain about how sick they were. I was afraid to get a glimpse of my future. I pictured a giant pity party.
What I experienced was extremely different. These groups are full of survivors! They are handling this disease with the most positive attitude possible and are making the best of the hand they have been dealt. I have learned so much from these people.
In these groups, you will find people who have been where you are, recently diagnosed, scared, and overwhelmed. You will find people willing to share the tips and tricks that helped them face some of their darkest moments and most difficult times. You will find people to help support and encourage you through your journey.
To find out more about the role of the support group, I reached out to Muriel Finkel from the Amyloidosis Support Groups (ASG) and Marsha McWhinnie from the Canadian Amyloidosis Support Network (CASN).
WHO IS THE SUPPORT GROUP FOR?
Support groups are for patients with all types of Amyloidosis and their caregivers. Their websites are full of information and resources. Online support groups such as the Amyloidosis Support Groups on Facebook, CASN, Smart Patients, and One Amyloidosis Voice are private and require access permission by the administrators. Such security for access offers comfort for the participants to reveal more personal information. In person support groups provided by Amyloidosis Support Groups, CASN, and the Amyloidosis Foundation, offer additional services and support for patients, as well as access to expert medical professionals.
WHAT IS THE GOAL OF THE SUPPORT GROUP?
Support groups, in general, are concerned with awareness and education. Their goal is to educate and empower patients, promote awareness, support medical research, and to improve the quality of life for those with Amyloidosis.
WHAT SERVICES DO SUPPORT GROUPS PROVIDE?
- Both ASG and CASN operate a toll – free number, the primary goal of which is to provide a compassionate, understanding ear to those recently diagnosed. If you have received this life-altering and scary diagnosis, this call can let you know you are not alone and that there is hope.
- Their websites provide educational videos and articles, medical referrals, patient stories, links to Amyloidosis support resources, and lists of upcoming meetings.
- Both groups host support group meetings, which provide an opportunity to meet other patients and caregivers. During these meetings, an Amyloidosis expert presents, and there is an opportunity to ask questions and share your story. The ASG hosts meetings throughout the United States and the CASN has meetings in Toronto and Quebec.
- The Amyloidosis Support Group also holds a special meeting for ATTR in Chicago every two years, with the top experts in the country participating and presenting.
- ASG sponsors multiple groups on Facebook so patients and caregivers can chat with each other, share stories, and ask questions. These groups are mediated by wonderful volunteers who are up to date with the latest treatments and advances in the field, with assistance from medical advisors. The groups on social media allow patients from all over the world to connect.
- Smart Patients is an online forum with conversations among the amyloidosis community, with topics ranging the full gamut from symptoms to treatment.
- A new online community was recently launched called ‘One Amyloidosis Voice,’ which has a message board, social wall, trusted resources, a news and meetings section, and a diagnosis educator.
- Through online forums and participation in local events, Support Group administrators and volunteers spread the word about Amyloidosis, with the goal of increased awareness.
- Both groups are interested in supporting medical research by sharing information about clinical trials with patients. Pharmaceutical reps are sometimes present at meetings to answer questions, and to help connect patients with trials that might be right for them.
WHAT A TYPICAL SUPPORT GROUP MEETING LOOKS LIKE
Although each meeting varies and ends up with a flow of its own, administrators do follow a basic outline which includes the following:
- New Business – A discussion of what is new in the field of Amyloidosis and what the Support Group has been working on
- Guest Speaker – An interactive presentation from an Amyloidosis expert (usually a doctor or other medical professional)
- Question and Answer Period – Questions are encouraged, and one on one time with the presenter may be possible
- Meal or snack is provided (depending on the timing of the meeting)
The atmosphere is laid back and comfortable, and patient confidentiality is paramount. It is absolutely your choice as to whether you share your story and ask questions.
BENEFITS OF THE SUPPORT GROUP
- You hear inspiring stories which can provide comfort and hope for the future.
- You are kept up to date with the treatments, clinical trials, and medical breakthroughs.
- You can share your story with people who genuinely get it.
- You can ask for help if you have questions. Facing symptoms and looking for relief? Concerned about a new symptom or side effect? Chances are there is someone in the support group who has faced it and can offer help and support.
- You can find information on what to expect from treatment. There are people in these groups who have endured stem cell transplants, chemotherapy, and have participated in clinical trials. In some cases, patients have tried various types of treatments and can offer suggestions of what to expect, and how to deal with side effects.
- You can also find information on the leading Amyloidosis Specialists and Centres of Excellence. Because Amyloidosis is such a rare disease, it is vital to get the experts on your team.
- Need to vent? We do that too. Sometimes it just becomes too much. The weight of it all hits and you feel overwhelmed and lost. There’s someone here who can provide a listening ear.
I am so glad that I decided to join these support groups. Not only do I get to hear the inspiring stories of those who are making life happen despite the challenges they face, but I have learned SO MUCH. Amyloidosis patients who have been living with this disease for years have a wealth of information. The administrators of the groups are also up to date with current treatments, clinical trials, and medical breakthroughs happening in the field of Amyloidosis.
I have met people whose advice has helped me through challenging times. There is something special about talking with someone who has been where you are now. Someone who has received the same diagnosis and faced the same overwhelming feelings of fear and uncertainty. To know that others have been where you are and have come out the other side is comforting and inspiring.
Thanks to these support groups I know I am never alone.
How to contact a support group near you
Amyloidosis Support Group
Canadian Amyloidosis Support Network
One Amyloidosis Voice
Lori Grover is a guest blogger for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey. More wonderful blogs by Lori can be found on her page Amyloid Assassin. When not writing, she is mostly a stay at home mom, florist, crafter, lover of books and food. Enjoy!