Archive for FDRS
FDRS Wants YOU!
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“When you do nothing, you feel overwhelmed and powerless. But when you get involved, you feel the sense of hope and accomplishment that comes from knowing you are working to make things better.” (Anon)
FDRS needs your help! We are looking for bright, mentally energetic volunteers who are dedicated to bringing fat disorders awareness and education to our country. Could this be you?
We need interested individuals to become ‘State Representatives’ for FDRS. Your duties would include but not be limited to: organizing local “get togethers” for fat disorders patients, organizing local fund raisers and bringing fresh ideas to accomplish these tasks and keeping your constituents informed of all developments regarding FDRS. All of us know how difficult it is to find a doctor who knows about fat disorders, much less find one who will treat us but with your help we believe we can change this. Plus, holding a get-together is a wonderful way to make new friends who know exactly what you are going through and can become a fantastic system of support. FDRS will provide support and help in any way we can.
If you would like to help us make a difference, please contact FDRS at either susangrimshaw@fatdisorders.org or carolereed@fatdisorders.org.
“Mystery Diagnosis” Air Date and Other News!
Posted by: | Comments The Discovery Health Channel’s show “Mystery Diagnosis” will be featuring a segment on Dercum’s Disease this month! It will air on June 21, 2010 at 10pm EST. Be sure to mark your calendars and spread the word!
Jake Tate, a Senior Airman from South Carolina, is the subject of this “Mystery Diagnosis” episode (Episode 903). Dr. Karen Herbst, San Diego, was consulted as well. Jake has done much to help spread awareness of Dercum’s Disease; he’s been featured on the local news in his area and his story was also covered in the Shaw Air Force Base paper. Please check out the following links for Jake’s story:
Fat Disorders in the News!
Posted by: | Comments Women’s International News, edited by Christine Vernon, just published its first of three installments on Fat Disorders, titled “Fat Disorders-Fiction or Fact?” Ms. Vernon was present at the recent 2nd Annual FDRS Midwest Conference and mentions the Conference in her article as well. This first series provides a very thorough background on fat disorders, Dercum’s Disease, Madelung’s Disease, lipomatosis, and Dr. Karen Herbst.
To read this first article, please click here: http://www.womensinternationalnews.com//61/52/Fat-Disorders—Fiction-or-Fact/. It might also be a good idea to bookmark this most informative site!
A big THANK YOU to Christine Vernon for her series on Fat Disorders!
Sue
President, FDRS
FDRS Updates! What’s New!
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The pic above says it all and not even everyone was present for this photo! The 2nd Annual FDRS Midwest Conference was a total success! All of the FDRS board members worked overtime on this event, especially Susan Smith, FDRS Vice-President and Event Planner. We had over 100 people present with 21 states represented…Amazing! A great time was had by all- new friends were made and I think everyone learned something too. Dr. Karen Herbst was the featured speaker and her presentation was most informative. She has provided an edited version of her presentation to FDRS in a downloadable PDF format. It is available on the FDRS site here for only $1.00 ! A CD (voice recording) of the Conference will also be available as soon as the editing is done. FDRS will let everyone know when the CD is also available. And, yes! There will be a 3rd Annual FDRS Midwest Conference! As soon as we have the date(s) for 2011, there will be an announcement so that all of you can mark your calendars. Currently, FDRS has a major Fundraiser planned for this September in Texas. Stay tuned for details!
FDRS has some important changes to announce! Three new board members have been added: Dr. Karen Herbst, Tina Tranfaglia and Scott Fulkerson. Dr. Herbst, Scott and Tina all contributed to the Conference in different ways…but were equally invaluable. Dr. Herbst now sits on the Board as the FDRS Medical/Scientific Advisor. Tina brings with her a wonderful business background and unbelievable work ethic ….and Scott brings his unique viewpoint- as a caregiver of a fat disorders patient, a businessman, and a preacher. Please welcome ALL of them! FDRS is always on the lookout for new board members, fundraisers, and volunteers; please feel free to contact me (Susan Grimshaw) at susangrimshaw@fatdisorders.org and let me know how you’d like to help.
FDRS is also announcing that from today on, the Forums on the website are OPEN to any registered user. Previously one had to be a member to access the forums. The Board has decided it is in the best interest of fat disorders patients to ‘open the forums’. You will need to be logged in to post on the forums. Carole Reed, FDRS Secretary and experienced forum moderator, will be overseeing the FDRS Forums. Scott Fulkerson will be moderating and ‘hosting’ the Caregiver and Support area of the Forums. Those of you who heard Scott speak at the Conference know he has a warm, compassionate ear and has seen first-hand how fat disorders can effect not only a person or a marriage, but an entire family. We have done some revamping, so the Forums may look a bit ‘bare’ right now, but once all of you join in, things will be hopping!
I’m sure I’ve forgotten something important, but that’s what I get for writing this after midnight! Feel free to comment or ask any questions:)
Sue
FDRS President
Dercum’s Disease Researcher is Recognized!
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Karen L. Herbst, PhD, MD
FDRS is pleased that Dr. Karen Herbst, USCD, has been nominated to the Rare Disease Day Research Hall of Fame for her work with Dercum’s Disease (adiposis dolorosa). It is wonderful that a research doctor is being recognized for her work with one of the fat disorders! Hopefully this nomination will aid us in bringing fat disorders much-needed awareness to both the medical community and general public.
The link to the Rare Disease Day Research Hall of Fame is here: Research Hall of Fame
Again, thanks to all of you that nominated this wonderful Fat Disorders researcher!
Rare Disease Day Partner
Dercum’s Disease Patient Tells Her Story
Posted by: | Comments As many of you know, FDRS is a Rare Disease Day 2010 partner. In order to spread awareness of both Dercum’s Disease and Rare Disease Day, a DD patient contacted her local newspaper and told her story. Monday, the newspaper published the article! The article was published in a Lynne, Massachusetts newspaper and features a picture of Elaine Chittick and her family. Elaine told her story and even mentioned the Fat Disorders Research Society website!
I commend Elaine on her initiative in spreading awareness of both Dercum’s Disease and Rare Disease Day! I urge all of you to contact your local newspapers and inform them of Rare Disease Day, and if you are so inclined, about your own fat disorder. I can provide sample letters too. I can be reached at susangrimshaw@fatdisorders.org.
The article about Elaine Chittick may be accessed here: http://www.itemlive.com/articles/2010/02/15/for_your_health/health01.txt. The Rare Disease Day 2010 website is: http://www.rarediseaseday.org. Please check out the Rare Disease Day 2010 website if you have not already done so. You may upload your photo there, tell your own story, and even enter a photo contest!
Remember, spreading awareness is key with rare diseases! Getting the word out is a big part of our battle.
Rare Disease Day Partner
Lipedema News Alert!
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Lipedema is one of the painful fat disorders that is not widely recognized by physicians and is widely under-diagnosed. Lipedema is classically thought of as a congenital painful fatty enlargement of the legs, with the feet typically unaffected. This disease predominately effects women, with weight loss resulting in no change in the lipedemic areas.
We have learned that SHAPE magazine is publishing a story on a woman with Lipedema who has documented weight loss. It is demonstrated that the woman loses weight but not in the area of the Lipedema. It is exciting that Lipedema is actually called a ‘painful fat disorder’ in this story! Please be sure to buy the April 2010 issue of SHAPE! Read More→
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