Sunday, October 9, 2016
Wednesday, September 28, 2016
Lipedema is NOT the same as being overweight or obese
I just want to mention that while there are obese patients, there are those who have Lipoedema (Lipedema), like I do, which is a rare, incurable disease that is genetic in nature. Not everyone who is overweight is merely obese.
With Lipoedema, it does not matter how much you diet or exercise...it's NOT the same as obesity. I was diagnosed in 2014 and the only thing I can do is manage it with Manual Lymph Drainage (MLD) therapy and compression garments...until they find a cure, that is.
Only 11% of women have Lipoedema, and they're often mistaken for simply being overweight or obese...which is NOT the case. I finally had a female doctor listen to my concerns and who sent me for a diagnosis. The male doctor I had previously totally dismissed my concerns that something was terribly wrong with my lower limbs. Needless to say, I dropped the male doctor and am grateful I found a female doctor who at least investigated my concerns and discovered that I had a rare, incurable, genetic disease.
And thanks to the ACA (and President Obama), I was able to get the diagnosis, compression garments, and MLD therapy I needed.
With Lipoedema, it does not matter how much you diet or exercise...it's NOT the same as obesity. I was diagnosed in 2014 and the only thing I can do is manage it with Manual Lymph Drainage (MLD) therapy and compression garments...until they find a cure, that is.
Only 11% of women have Lipoedema, and they're often mistaken for simply being overweight or obese...which is NOT the case. I finally had a female doctor listen to my concerns and who sent me for a diagnosis. The male doctor I had previously totally dismissed my concerns that something was terribly wrong with my lower limbs. Needless to say, I dropped the male doctor and am grateful I found a female doctor who at least investigated my concerns and discovered that I had a rare, incurable, genetic disease.
And thanks to the ACA (and President Obama), I was able to get the diagnosis, compression garments, and MLD therapy I needed.
Wednesday, January 13, 2016
The Lipedema Foundation
From their website:
"The Lipedema Foundation is funding multiple basic and translational research projects at multiple top-tier universities and hospitals in order to define, diagnose and treat Lipedema and related conditions such as Dercum’s Disease. We are furthering knowledge of adipose and lymphatic biology, and spanning physiology, genomics, immunology and endocrinology."
For more information, visit: http://www.lipedema.org
For more information, visit: http://www.lipedema.org
FDRS announcement re: the TREAT program for lipedema sufferers
I was diagnosed with Lipedema in 2014, which is a rare, genetic illness that is also incurable. The news below gives me, and others like me, hope!
All too often, insurance companies fight against paying for physical therapy, compression garments, and other treatments required to manage Lipedema (at this point, there is no known cure for it).
"MAJOR ANNOUNCEMENT from the FDRS!
We are SO excited to announce that, thanks to the generosity of the Lipedema Foundation, the UA College of Medicine - Tucson will now be home to the TREAT program! TREAT (Treatment, Research and Education of Adipose Tissue) will be led by Internationally renowned endocronologist Dr. Karen Herbst and will focus on the study of potential genetic, metabolic and hormonal causes behind the accumulation of atypical fat tissue.
We cannot be more excited to finally have a place where actual studies will be focused on lipedema, Dercum's Disease, FML and Madelung's! This is an incredible step forward in finding a cause, treatment and someday possibly even a cure for lipedema.
We will keep you posted as this new project rolls out and its progress!
To learn more about TREAT click here: TREAT PROGRAM
We are also excited to share that in September of this year Felicitie Daftuar of the FDRS launched her own foundation known as the Lipedema Foundation. The Lipedema Foundation will collaborate with top-tier universities and hospitals in order to define, diagnose and treat lipedema and related conditions such as Dercum's Disease. In addition to the TREAT program, the LF is also funding several other Research projects both domestically and abroad. To learn more, please visit Lipedema Foundation.
Click below to read more about what the FDRS is up to!"
http://conta.cc/1ZzYS45
All too often, insurance companies fight against paying for physical therapy, compression garments, and other treatments required to manage Lipedema (at this point, there is no known cure for it).
"MAJOR ANNOUNCEMENT from the FDRS!
We are SO excited to announce that, thanks to the generosity of the Lipedema Foundation, the UA College of Medicine - Tucson will now be home to the TREAT program! TREAT (Treatment, Research and Education of Adipose Tissue) will be led by Internationally renowned endocronologist Dr. Karen Herbst and will focus on the study of potential genetic, metabolic and hormonal causes behind the accumulation of atypical fat tissue.
We cannot be more excited to finally have a place where actual studies will be focused on lipedema, Dercum's Disease, FML and Madelung's! This is an incredible step forward in finding a cause, treatment and someday possibly even a cure for lipedema.
We will keep you posted as this new project rolls out and its progress!
To learn more about TREAT click here: TREAT PROGRAM
We are also excited to share that in September of this year Felicitie Daftuar of the FDRS launched her own foundation known as the Lipedema Foundation. The Lipedema Foundation will collaborate with top-tier universities and hospitals in order to define, diagnose and treat lipedema and related conditions such as Dercum's Disease. In addition to the TREAT program, the LF is also funding several other Research projects both domestically and abroad. To learn more, please visit Lipedema Foundation.
Click below to read more about what the FDRS is up to!"
http://conta.cc/1ZzYS45
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