Archive for FDRS
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→
Surviving Dercum’s or Lipedema Day by Day
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My Sweet Little Mudgie 2003
…Or How Do You Get Along in Life When All You Really Want to Do is Stay in Bed.
It’s really a struggle to stay positive when you have a chronic disease, such as Dercum’s, Lipedema, or one of the other fat disorders. It morphs your body into a shapeless mass of painful lumps, makes it sweat with the slightest effort and hurt with every move.
You look into the mirror and wonder why bother? I can’t do anything anyway without paying a painful price for my efforts. So, that’s the reality of life with a rare adipose disorder (RAD) but life still goes on and you have to find a way to move along with it.
What do you do? Read More→
Sign up for Alerts from the Fat Disorders Research Society
Posted by: | CommentsWe have added a new feature to the FDRS website. Now you can provide your email address and receive an alert every time we post news or another blog entry, such as to our popular Lipedema and RAD Diet blogs. Simply enter your email address in the box in the upper right hand corner of the page. It looks like this:
The Changing of the Guard…
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I am writing tonight to let all of you know I am resigning as President and Director of Fat Disorders Research Society, Inc. My resignation will be effective September 30, 2010. When Susan Smith and I first took on the job of founding a non-profit for fat disorders, I had very specific personal goals in mind.
My personal goals have now been met: Awareness is spreading like wildfire and adipose disorders patients are connecting more than ever- they no longer have to be alone in their suffering. FDRS has a great professional website that can be modified as the organization’s needs change. The medical community’s recognition of adipose disorders is slowly beginning to change. And….the 3rd Annual Midwest FDRS Conference is already in the planning stages (for 2011). If you missed this last Midwest Conference, please stay tuned to future announcements of the next one! It will be spectacular!
It is only through the hard work, dedication, and sheer stubbornness of a caring group of people that these goals were realized.
It is now time for me to step down as President/Director and let FDRS be taken to the next exciting level. My resignation has prompted the following changes to our Board: Read More→
The Challenge of Acceptance
Posted by: | CommentsStories 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: | CommentsJust 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!
