Archive for Awareness
Latest News!
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Just a very brief update on some of the latest news and happenings:
–Dercum’s Disease was presented by a patient (with Dercum’s Disease) at University of California-San Diego Dermatology Grand Rounds on January 28th 2010.
–Dercum’s Disease was presented at University of California-Irvine’s Dermatology Grand Rounds by Dr.Vip Soni.
–Madelung’s Disease was presented at the New England Dermatology Society’s meeting at Boston University on Deccember 5, 2009.
And, last but not least:
Karen Herbst, PhD, MD, is in active discussions with the pharmaceutical industry to find orphan drugs for Dercum’s Disease!
So, although it may seem like not much is actually being done, it is. Baby steps will lead to giant strides:)
Rare Disease Day is February 28th!
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Fat Disorders Research Society, Inc. is proud to announce that we have been accepted as an official Rare Disease Day Partner! Rare Disease Day is an annual awareness-raising event coordinated by EURORDIS at the international level and NORD (National Organization for Rare Disorders) here in the United States. Rare Disease Day is always observed on the last day of February. This year, the day is February 28, 2010.
Rare Disease Day is an important day to those of us that suffer with a rare disorder! It is our day to spread awareness, to remind, and/or inform people that rare diseases need critical attention: rare diseases are often ‘orphan’ diseases without research, without a cure, and, unfortunately, all too often without even a proper diagnosis. This lack of hope can be very detrimental to a patient who is already vulnerable and possibly socially isolated.
There are several things that we can do to spread the word and help our cause. First you may visit http://www.rarediseaseday.org and submit your own personal story and read about planned events. For information and events specific to the U.S., please visit http://rarediseaseday.us/.
You may also write or email your state governor, urging him or her to recognize the importance of rare orphan diseases by issuing a proclamation in support of Rare Disease Day. (Emails or letters to state governors must come from residents of that state.) Feel free to email FDRS for a sample ‘letter’ for submission to your state governor. Another equally important thing to do is to contact the media in your area–newspapers, radio stations, and TV stations and/or shows. Again, emails or letters work just fine! You may contact FDRS for sample contact information and ‘presskit’ info– including a question/answer sheet.
Please feel free to add your own ideas to the comments section here! It is our day and we should take full advantage of the resources we have to get the word out!
In Carole’s Words…
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Carole Reed, FDRS Secretary
That Offensive Word, “Fat”…..
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As you know by now, the name of our non-profit organization is the “Fat Disorders Research Society”. Our Society name has (surprisingly) been met with some negative reactions- even by those patients suffering with fat disorders. It appears the offensive word is “fat”. The word “fat” seems to make many people inwardly twinge and feel uncomfortable–almost as if it’s contagious. Several times we have heard variations of “Why does your Society name has the word ‘Fat’ in it? Couldn’t you just use Dercum’s Disease instead?” The answer in a nutshell is NO.
FDRS exists to spread awareness, first and foremost. Fat is often the topic of much discussion, although rarely in a positive tone. While fat is hated, berated, reviled and yes, even embraced by some, the fact is -we all have it. FDRS exists not to discuss weight loss or eating disorders, but to educate the public about the existence of the little known disorders of body fat. Yes, you can have a disease and/or disorder of your body fat! Many people suffering with fat disorders may not even know what is wrong with them! While there may be varying symptoms present (as outlined on this website), a common denominator among sufferers is often the realization that they can’t lose weight and/or they can’t lose certain areas of fat on their bodies, no matter how much they exercise or how little they eat. It IS really true that it is not only food that can make you fat.
All of our bodies contain varying amounts of fat. There are actual diseases or disorders of fat that can cause a myriad of symptoms, ranging from disfiguring to painful, and often, disabling. One fat disorder that can cause relatively rapid, uncontrolled weight gain and pain is Dercum’s Disease. The exact cause of Dercum’s Disease is not known at this time. There are definite signs and symptoms of Dercum’s Disease, but at this time they are not readily recognized by the general medical community. There is no special ‘test’ to determine if a patient has DD (Dercum’s Disease). Diagnosis is made clinically, but due to a lack of widespread awareness of the disease itself, patients can go undiagnosed for years. Madelung’s Disease, Lipedema, and Familial Multiple Lipomatosis are some of the other fat disorders which are also often overlooked by medical professionals. It is not unusual for a patient suffering with one of the previously mentioned fat disorders to be told by their physician or even a specialist, “Yes, it appears you have Dercum’s Disease, but I don’t know anything about it and I don’t know anyone who does”. The patient is then left totally bewildered, undiagnosed, untreated, with nowhere to turn.
The Fat Disorders Research Society, Inc. was formed to help spread awareness and generate research funds for these debilitating fat disorders. Part of this awareness needs to include the general prejudice against the word “fat” too. It’s not contagious, but we do believe Dercum’s Disease and the other fat disorders are widely under-diagnosed- it is our hope that with your support we can make a difference. So, please join us in our quest today, won’t you?
