Author Archive
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→
Living Life with Lipedema
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Obese or Ill?
At first glance, you might turn away in disgust seeing three obese women like the ones pictured above. They know. They have all experienced the stares, the whispered words and sometimes, the hateful, hurtful words others feel justified in speaking to them.
Surely these women know that all they have to do is push away from the table and exercise? You might wonder how in the world they let their weight get so out of control. But what if I told you that they are ill? That their fat is diseased and can- not be dieted or exercised away? Would it make a difference? Would you say that they are using disease as an excuse? Would you say that they are just too lazy and like food too much to do anything about their weight? They have heard all of that and more, but the truth is they ARE ill.
They have a fat disorder called Lipedema. Lipedema was first described in 1940 at the Mayo Clinic. Lipedema typically causes symmetrical weight gain below the waist, in the stomach, hips and thighs but can also affect the upper arms. The fat is painful and fluid filled. Published medical data verifies that this diseased fat cannot be dieted or exercised away. As the disease progresses, it often leads to secondary Lymphedema. There is no cure for Lipedema and treatment consists of Manual Lymphatic drainage, compression garments, wrapping and sometimes, liposuction. Lipedema affects mostly women, but there are a few rare cases affecting men. This disease is poorly understood and often misdiagnosed in the United States, but is well known in some European countries, especially in Germany where it is treated with liposuction. Read More→
“What is Being Done”: An Update by Karen Herbst, PhD, MD
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The word ‘anticipation’ reminds one of the commercial depicting hungry people waiting for their super thick ketchup to start flowing. The key here is that the person waiting is hungry. If you are not hungry, you still anticipate the end, but you don’t care as much. So it is with having a fat disorder and waiting on news of any new research or medication or reason to be hopeful – we are all hungry. Let’s face it; there are too few people investigating fat disorders and these are difficult disorders to figure out – most have been around for over 100 years and many people continue to have no diagnosis and others are suffering.
So what is being done? Here is an update:
1. There is no secret treatment for Dercum’s disease. Some people have benefited from one kind of treatment or another. You can find out everything about treatment possibilities by looking at my website (http://www.lipomadoc.org), calling for an appointment at UCSD (619-543-6303) at the VA (858-552-8585) or at my new location, the Center for Advanced Medicine (760-632-9042). I am at the latter location to see patients and to make available the cyclic variations in altitude cycling altitude simulator(aka CVAC) for those patients and for continued research. Read More→
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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!
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!
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