A good friend of mine received a very somber pronostic when diagnosed with amyloidosis: not curable and 2-3 years left. Thanks to this support group (found by googling) , I soon learned that, on the contrary, many people had survived this rare disease and, even better, thanks to a quick reply from a wonderful lady responsible for this support group, my friend was put in contact with a local survivor of the disease. This precious contact meant hope again for my friend as he was given tons of info on treatments (etc.) and names of local experts that he could contact for professional help. I am astonished by the fact that some medical professionals are unaware that they do not have the full picture of a disease... in fact, no one has a full picture of any disease. This support group is absolutely VITAL. Thank you to the wonderful people who run it and thank you to the wonderful people who offer their experience and guidance to their needy peers.
On January 18, 2013, my life changed. I suffered a stroke while eating dinner with my husband of 8 months. While at the hospital they questioned him of my family history, he turned to my sister Ellen Cameron for help. Ellen told the doctors that she had Amyloidosis and our mother and sister had passed away So I was immediately tested and confirmed to also having amyloidosis. My sister, probably had Muriel on speed dial during that time. emails were provided to both me and my husband for support groups in our area and we were put on the mailing list for the big meeting in October. We read several of the articles Muriel sent and worked with the team at University of Maryland and had my Liver Transplant October 2014. I wasn't able to attend the last meeting due to my husbands work schedule. But I participate in every study that is brought to me. And will continue to do so. I read all the emails and keep up with the articles and quiz my doctors on any new information. I have met Muriel and she is a one woman dynamo... she makes you feel very special, and she listens... as if she has nothing to do. Muriels department heads or staff are all helpful, supportive, understanding. Eager to hear your story, and comforting.
Support Group meeting attendees get educational and emotional support. They learn about the disease in plain, easy to understand language from doctors who specialize in Amyloidosis. Newly diagnosed attendees can ask questions and learn from those of us who have gone through various treatments that you can live a "normal" life. Every meeting reviews current and upcoming treatments as well as clinical trials. Additionally information about financial assistance is often discussed. These meetings are a must for anyone diagnosed with this insidious disease.
I was lucky enough to be able to attend the Mayo meeting in Rochester last Saturday. I wasn't sure initially if I was going to like it. However, if you have the opportunity to attend a meeting do yourself and your significant other a favor and attend!
I'm not much of a joiner, but, I must say that the group of people I met were wonderful.
It was heartening to hear from people that had achieved "a response" to treatment, to people that were just starting to deal with this disease, to the two daughters from Wisconsin that attended to educate themselves on behalf of their dad, who hasn't got a confirmation on which form of Amyloidosis he has yet.
It was the first time i have met anyone else who is dealing with AMY either personally or taking care of someone who has AMY.
THe doctors, well they were both wonderful. I spoke with Dr. Gonsalves, what a genuinely caring fellow he is, and in ten minutes I understood more about AMY than I've learned on the Internet in the last 10 mos since the initial finding of AL AMY in my lungs.
DR. Gertz was also informative and caring. Two doctors giving their Saturday up, to help us understand what we are dealing with is extraordinary. If you have or know someone who has Amyloidosis of any kind you owe it to yourselves to attend a meeting to learn about this rare and potentially fatal disease.
I think the best thing about the meeting was learning I wasn't alone with this thing called Amyloidosis. Just getting the opportunity to meet and talk with people that have and or/are dealing with AMY in its different forms was eye opening. I finally met Muriel who I had only talked on the phone or emailed before. She is a most kind and knowledgeable soul. I am looking forward to my next meeting with this wonderful group!
Muriel Finkel was so exceptionally helpful when I called her 3 years ago when my husband was diagnosed with Amyloidosis. I was having trouble convincing him to get another opinion, and her advice helped greatly. I have been in touch with her since then and she is always gracious and caring with her advice.
they are extremely helpful and supportive no matter what kind of amyloidosis you have. Muriel and Paula are the very best of people:) would like to see if they ever get Dr. Gertz to come to a Mid-Atlantic meeting maybe Dr. Skinner
This organization is the best! When my husband was diagnosed with AMY, I was heading in 48 hours for a 6 week assignment overseas and needed answers quickly. I reached out to this organization and received a call back within 30 minutes. I knew where to go for treatment and evaluation and my husband, more importantly, was able to go to a support group in Boston before he ever started treatment. This group was extremely helpful and all of the support meetings are educational. It has meant a lot to us and I credit the care and support from BMC/Amyloidosis doctors and professional staff with his great survival. He has a vibrant and active life.
Muriel: First let me tell you how thankful we are to have you and your team supporting the patient community. Many praises for your efforts; you are second to none!
Now to my suggestion. The patient community needs an assigned member from your staff to help patients source and obtain charitable funding. I believe that there are numerous charities willing to provide grants to patients beyond the two charities that are typically recommended. This effort will not be easy. It will require someone with the ability to network well and the diligence to pursue this objective and not give up. Amyloidosis is typically a non-supported disease when it comes to charitable funding. Herein is the objective; create a list of 10-15 charities ( known to support Amyloidosis ) that can be provided to patients who are in need so they may apply for charitable funding.
My sincere thanks to you and your team!
My diagnosis and treatment with light chain amyloidosis was accompanied by fear. I had wonderful treatment by gifted clinicians. They were not afraid but I was! I attended my first support group two months after having my STC, nine months after diagnosis. Had I known how much information, companionship and hope I would get from the meetings, I'd have traveled far to get to one sooner. Each story I hear, each presenter I hear give me courage and hope. I am 28 mo post STC. My course has not been perfectly smooth but I am feeling strong and hopeful. Thank you Muriel and Amyloidosis Support for all your assistance!
ASG is a shining example. They were instrumental in guiding us as to how to proceed when we were first hit with the blockbuster news that I had amyloidosis.
Their patient support meetings have brought leading researchers and practitioners to patients and their families and in the most generous form imaginable with no charge for their assistance
These stories of patients helped me cope with amyloidosis and I hope that mine will give encouragement to others also.
My oldest brother passed from Hereditary Amyloidosis and his diagnosis was the first any of us had heard of this horrible disease. My youngest brother at 54 is suffering greatly from the same disorder and we are crushed. This site has been a God send of support, information and assistance. Through this site we were able to contact the Dr's who originally handled my older brothers' case. Its an amazing website ran by caring wonderful people and I'm so thankful I landed here on my first online search for info on this condition. Thank you so much.
I have amyloidosis, a very rare condition. I developed it as a result of having an incurable blood cancer. It is one of a number of types of amyloidosis which can be fatal. Many people are not diagnosed until they have end stage disease because it is so rare and can present with such a variety of symptoms. Muriel Finkel, who oversees the Amyloidosis Support Group, Inc., runs an amazing not-for-profit which assists people with all kinds of amyloidosis. She responds immediately to requests for assistance, be it finding a doctor who is an expert treating people with the disease, or referring patients to the latest research articles and drug studies, or providing other kinds of support. In addition, she organizes meetings in various cities in the United States and invites leading physicians to speak at the meetings and help patients figure out how to get the best care available. Since Muriel is so knowledgable and dedicated to the cause, doctors have been willing to donate their time to this group of patients, many of whom are coping with the most serious aspects of the disease which may require a stem cell transplant, and/or a heart or kidney transplant. Amyloidosis is an orphan disease. There are no statistically significant studies or huge organizations to assist patients and caregivers navigate their way. Muriel Finkel and Amyloidosis Support Group, Inc, does a phenomenal job in helping patients and their families cope with this devastating illness.
After being ill for a short time, my husband, Bill was diagnosed January 13, 2004 with Amyloidosis. He passed away February 22, 2004. I found out about this support group and went to several meetings in Philadelphia. This disease is so rare that I had no idea where to turn for any support to help me or my three grown children, get through the grieving process. I was very grateful to hear of others and how they were dealing with this disease.
Although I haven't been to any meetings for years, I like being informed through emails of all the progress research has made.
My husband was a very healthy man taken to soon, 52 years old, and to quick by a disease neither of us heard of. This support group is a place for families to meet others who are going through some of the same health issues and find out where they can be best treated for this disease, I hope this group continues with their wonderful support for Amyloidosis patients, giving hope along the way.
This group was the only place to turn to when I was diagnosed with a non curable disease. I got current information that was not to be found any other place. The members are from all over the world. We all share experiences, solutions, medications, new trials, and other information that can only be learned by having the disease or caring for someone with it.
Can't say enough about the Amyloidosis Support Group. This is a disease few people are aware of, and we were lucky enough to find Muriel Finkel and the Amyloidosis Support Group. Fortunately, our internet search brought us to this group, and thankfully, we were in great hands! It is very lonely and scary to be diagnosed with a disease so few (including doctors!) know much about and this group has been for many - literally - a life saver.
I was diagnosed with Amyloidosis [which is a very rare form of cancer that can attack any or all of your organs and available spaces] in 2013 as the result of a annual health checkup. It was a very lonely feeling because while the clinic where I was diagnosed did know something about it they did not have any patient experience with this. After I moved my treatment to MD Anderson Cancer Center I continued my habitual Internet browsing and became aware of this group and that it held meetings in Dallas, TX. I went to a meeting and found a) others with similar problems, b) a printed piece of literature about this, and c) most importantly other folks who just wanted to make sure that it is not "JUST ME!".
Be assured that it is not "just me" and that there is medical research progress has resulted in new drugs and so, "Help is on the way!" and it is discussed at each and every meeting you will attend.
There will be meetings of this group in Houston at MD Anderson Hospital's conference center starting September 2016.
I was diagnosed with Amyloidosis in 2010 and immediately looked on the Internet for information - what a mistake! The first sight I found said I had 6-12 months to live; needless to say I was devastated. It wasn't until I found AMS and Muriel Finkel that I received correct information, the knowledge of wonderful doctors and the MayoClinic: in other words, hope. This group offers a place to read the correct and the latest information on Amyloidosis, to relate to others with the disease through attending meetings with knowledgable doctors or through an on line forum, to ask hard questions and get honest answers and to feel at ease knowing that we all going through the the same things. A wonderful group!
My brother is still walking and not in a wheelchair as well as a much better quality of life as a direct result of the assistance from Muriel Finkel of ASG. She works with hundreds of people and yet remembers us all and she remembered by brother after one meeting he attended. Thanks also go to Kay Rowley the ASG NW representative that got him to his first meeting. My brother is in a trial for ATTR and is now in the second phase. I go to all the meetings in the Northwest that are held in Seattle and Portland. Doctors from clinics and research facilities all over the US have taken the time and effort to come to us, via the ASG. It is hard to say no to Muriel! Thank God! Most of my family carry the mutation and our generation would not have had a chance without this organization: that gets people to the right doctors, gives info about drug trials, and keeps us abreast of new research and treatments globally. Their website is well set up and easy to follow. You get personal attention. Thanks to all who volunteer!
Shortly after my sister was diagnosed with familial Amyloidosis, I immersed myself in researching about it and stumbled upon this group. From the get-go, Muriel and Kay have been of invaluable help with their deep knowledge, compassion and responsiveness. Meetings and emails are packed with useful information and opportunities to connect with others on this journey. They deserve high marks, and our family's gratitude.