Archive for Awareness
News and Announcements 7.25.11
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There is so much going on in our community that it is time for another update!
Heidi Sykora named Conference Leader for next FDRS Conference
We are pleased to announce that Ms. Heidi Sykora has been selected to lead the planning for the next FDRS Conference. She was chosen from among 3 finalists, including Cathy Cameron and Mary Rose Accetturo, all of whom have great qualifications and great ideas. It is heartwarming to see so many people stepping up to take an active role in this huge endeavor. Heidi will coordinate a large team of volunteers to help us continue to enhance the content and attendance of each conference. Heidi lives in the Milwaukee area, but was born in raised near Chicago. The exact location and date for the next conference has not been chosen, but we anticipate it will be in the suburbs of Chicago, possibly in Fall 2012. The only thing we know for sure right now is that it will not be held at the Sheraton Suites Elk Grove Village, as our attendance will exceed the space they have available. In case you are wondering, our DVD of the 2011 conference is almost ready, so we will be announcing its availability soon! Read More→
The Challenge of Acceptance
Posted by: | Comments Stories from Patients with Adipose Disorders 
From Carole:
I have never been one who was completely comfortable with change. Changes, for me, have always brought challenges, some great and some small. With time, I have been able to accept even the most difficult of changes in my life and gone on to find happiness and contentment. However, I must confess I have run aground when it comes to a peaceful acceptance of having a fat disorder.
I always knew something was wrong. There had to be a reason I never felt quite right even though doctors told me I was healthy despite carrying extra pounds. The signs and symptoms that gave me pause for consideration were chalked up to various perfectly explained reasons, but never felt like the right fit to me. Doctors kept telling me I just needed to lose weight, exercise and everything would get better.
Here it is 30 years later and I am still being told the same thing by most doctors, BUT now I know what is wrong. I have a fat disorder. Lucky me…but at least the “enemy” has a name these days. I have learned to pace myself(most of the time), knowing that when I am attempting to cook, clean or try to live some semblance of a normal life and I get “noodle legs” that it is time to sit down to keep from falling down. Having a fat disorder forces you to prioritize and often the choices you have to make are fraught with emotions.
- Do I want to lie in bed, have to ask my husband to bring home dinner or fix his own just so I can go visit friends or do I want to take care of him?
- Do I have the stamina, legs to walk where I need to go, or enough energy to attend my child’s or grandchild’s graduation, dance recital or wedding or a friend’s funeral? And if I do go, what price will I pay later?
- Is there anything I HAVE to do tomorrow if I use up all of my energy today so I won’t be able to even get out of bed?
As you can see, having a fat disorder forces a lot of decision making and careful planning, although I’m sure you know that old saying by poet, Robert Burns…”The best laid plans of mice and men often go awry”. Read More→
Dercum’s Disease Featured on Mystery Diagnosis TONIGHT!
Posted by: | Comments Just a quick reminder to tune into the show Mystery Diagnosis on the Discovery Health tonight, Monday June 21, 2010. Tonight’s show will air at 10pm EST (9pm CST) and will feature a story line about Dercum’s Disease. Jake Tate is the patient and his story is the one told during part of the show.
This episode will help to spread awareness of Dercum’s Disease-as well as to illustrate that there is no ‘typical’ Dercum’s Disease patient. The link to the Mystery Diagnosis website is here: http://health.discovery.com/tv/mystery-diagnosis/
Don’t forget to tell a friend and tune in tonight!
2nd Annual Canadian Texas FDRS Fundraiser
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Saturday, September 11, 2010
Schedule of Events:
10am 5K Run/Walk (organized by Mistie Walser)
1 Mile Fun Run/Walk
12noon Luncheon
After Lunch:
Silent Auction
Speakers
“Going for the Underdog” Film Documentary by Kimberly Lowery
CVAC Sessions available!!
Canadian CVAC Center (806) 323-8205
124 West Hobart Avenue
Canadian, TX
Enjoy reduced rate CVAC sessions with half the proceeds going to
FDRS, starting Monday, September 6th, 2010-September 11, 2010
10am-6pm daily, except for Saturday, Sept. 11th (afternoon only)
Sessions by appointment only.
Local Lodging includes, but not limited to:
Best Western (806) 323-9660
303 S 3rd, Canadian TX
Canadian Courts (806) 323-8058
220 N 2nd, Canadian TX
Quiet Inn (806) 323-6111
200 Cedar, Canadian TX
Kim’s Cottage (806) 323-5527
212 Main St., Canadian TX
Lodging is limited; book early!
Nearest airport is Amarillo, TX, approx. 2 hours away.
Contact Kristi Lowery at (806) 255-0581 with questions!
More details will be added as the date nears!
FDRS Wants YOU!
Posted by: | Comments “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
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→