Archive for Awareness

Jul
26

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→

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Aug
19

The Challenge of Acceptance

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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→

Categories : Awareness, FDRS, Support
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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!

Categories : Awareness, FDRS
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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!

Join the forum discussion on this post

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Jun
13

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.

Categories : Awareness, FDRS
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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:

Jake Tate Shaw Air Force Base Article

Jake Tate News Story Article

Click here for the Video of the Jake Tate News Story

Categories : Awareness, FDRS, Press
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