TMA continues to provide valuable information and support to me as I navigate this rare disease that afflicts my wife. As a caregiver the relationships that I have made via my association with TMA have been invaluable. The annual patient conferences offered by TMA to its membership provide the latest information on treatments, research efforts, and coping strategies. These conferences also provide an avenue for personal contact with others with the various forms of the disease as well providing opportunities to meet with the medical community members specializing in Myositis.
My wife was diagnosed with Inclusion Body Myositis in 2008, shortly after we had both retired and had begun planning an active retirement with bicycles, kayaks and travel. The Myositis Association was a great help in adjusting to that terrible news by providing resources, support group contacts and other information. We continue to be heartened and hopeful that the research supported by TMA will bring a cure, or at least relief, from this disease. We look to the TMA website almost daily for supportive information.
With a small staff and budget this organization provides outstanding educational and emotional services to patients and caregivers. They also have assembled a world class medical advisory board who is helping to create awareness of this rare disease and conducts research.
Finding the resources to help me deal with my rare disease, Immune Mediated Necrotizing Myopathy, is not easy! Luckily, TMA's medical advisory board is unbelievably available for advice and consulting. And when TMA holds its annual patient conference, being able to actually meet and talk with these world-renowned medical experts is as they say 'priceless'. I don't know what I'd do if i had to face my disease without TMA's help.
I joined TMA because I have the rare muscle disease, Polymyositis. I didn't know another soul with the disease and didn't know what to expect from joining TMA. Since 2006 I have been leader of a local support group, initiated by TMA. We receive great support for individuals, their families and the group in general. Now I know, as do our group's members, that I am not alone with my disease. I've found great doctors, and met many others, all through my membership in TMA. I am a regular donor and wish I could give more. I especially appreciate the annual patient conference for its informative sessions and fellowship opportunities.
I was diagnosed in February 2010 with polymyositis, and six months later lupus. In 2011 I started a wellness campaign to gain back my mind, body, and spirit, and help others. It was around this time I reached out to TMA. They responded and offered their time and effort to help me achieve my goals, and help spread awareness to others. I Can't thank them enough for what they have done to help myself and others like me.
My husband has inclusion body myositis and we have found TMA to be so very helpful in dealing with this disease. The newsletters, support groups and the yearly conference has been a tremendous resource for us as this disease progresses. We had never heard of IBM and knowing that we have support through TMA has made us feel less isolated.
Dermatomyositis with ILD is rare and there is No Cure! Most die within 5-7 years after being diagnosed. I am beating the odds am going on my 12 year. This terrible disease effects my lungs, joints, muscles and everyday living.
This past September I was able to go the Myositis Assocation Conference in Reno, NV. My husband went with me and what an experience. the class sessions were very informative, meeting others whom have Myositis, doctors from all over the world. There were caregiver classes which helped him understand what I'm going through and I learned what he is going through. We left Reno, feeling you don't give up, you fight to keep on living.
The Myositis Association has been a world of help and a lifeline for my wife and myself since her diagnosis with Polymyositis in 2009. The information from their website, the sponsored local support groups, as well as the annual national patient conferences have made the journey into effective treatment so much easier. I cannot imagine how we could have done this without the very valuable assistance of The Myositis Association.
In 2008 I was FINALLY diagnosed with a rare disease that I had never heard of before. Because of the long journey I had been on, in search of a diagnosis, it was evident that the doctors also were not very familiar with it.
I searched the internet to find out all that I could about this disease called Myositis. There I found The Myositis Association. Their web site offered an abundence of information, but was a lot to absorb.
I signed up to be part of a support group, but found that my area didn't have a suppoert group leader. My wife talked me into volunteering for that position. I fouund that the association was very helpful to give me the information that I needed to start up a group in our large area. This turned out to be very therapeutic for me.
Then I went to my first Annual Patient Conference, where I met many more people that shared one form or another of the same disease that I had. We visited and found that our stories, although different were very similar. I also met the TMA staff and found them to be very dedicated and caring people. You could tell right away that this was so much more than just a job for them. I also met the board of directors, and the medical advisory board. I went to break out sessions where I learned more about my disease, as well as what research and clinical trials were ging on. Learned that The Myositis Association had funded a lot of the research that is going on, to help treat and look for a cure for Myositis.
The Myositis Association has been a life boat in the middle of a stormy sea for me.
I've had Inclusion body myositis diagnosed for 6 years. The educational resources of TMA have been very helpful. I have attended support groups locally and am about to be at my 4th annual nation-wide patient conference.
Six years ago I was diagnosed with Myositis, a rare chronic disease. My doctors didn't have much information for me so I went to the internet. I found The Myositis Association (TMA). Their website contained years of information, research news, clinical trials and resources to assist me in my quest for information about my disease.
For the last six years, TMA has been the top source for my information about my disease. They have provided the latest updates and information on research, medication, and the latest clinical trial opportunities. TMA provides its members not only with information, but support by bring together its members at their annual patient conference. This conference brings patients, physicians, caretakers, and vendors together to share advancements, information, and ideas.
A lot of people owe the quality of their lives to TMA.