Tuesday, March 14, 2017

Without health insurance through the ACA, managing my Lipedema will become more difficult

Here is a before and after shot of how my legs looked prior to having compression garments and Manual Lymph Drainage (MLD) at the physical therapy dept. at Penrose-St. Francis Hospital. My physical therapist is Lil and she's been working with Lipedema patients for over 20 years.

Unfortunately, with the impending rollback of the Affordable Care Act, it's likely that I will lose my health insurance and will no longer be able to have this physical therapy, meaning that my Lipedema will continue to progress. 

I was so happy to get treatment and to think I may be without it again worries me. It took me years to get a diagnosis and I was so relieved that I could begin treatment. But now it feels like soon I'll be back to square one again. 

Before MLD and compression stockings
After MLD and compression stockings


Sunday, March 12, 2017

[Updated] Coming August 10, 2017: Lippy Legs & All – My Life with Lipedema

Scheduled for August 10, 2017 release.
You can pre-order your copy from the publisher here:
https://www.smashwords.com/books/view/710509

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For years, I watched as my calves legs grew larger, bruised easily, and became more painful. Even bumping against a chair or the corner of a wall would send shockwaves of pain through my calves and leave me with huge bluish-purple bruises.

I knew something was wrong, but what could it be? I thought it was a simple case of edema or general swelling, but keeping my legs elevated and taking diuretic pills had no effect. In fact, they only became worse.

In 2014, after several attempts to locate a physician who would help me figure out what was wrong, I was lucky enough to get a diagnosis. I had Lipedema, a genetic disease I'd never heard of before. It's a mystery disease with no known cure thus far.

Not widely discussed, Lipedema is rare and only affects about 11% of women. Few doctors are able to recognize the symptoms, nor have they been exposed to information about the condition and how it relates to the all-important lymphatic system.

LIPPY LEGS & ALL is the story of my life (thus far) with Lipedema. I'll discuss, in detail, what I've learned about the disease, how it's permanently changed me both physically and mentally, and why I'm determined to bring awareness to this condition so women who may suffer from Lipedema can get the essential diagnosis and treatment they deserve.

Without a proper diagnosis, treatment, and rehabilitation, a Lipedema sufferer can face a bleak future of wheelchair-bound immobility or, worse yet, amputation of their limbs. No woman deserves either of those things; if I can cast a wider spotlight on Lipedema through the publication of this book, I will.


Wednesday, September 28, 2016

Lipedema is NOT the same as being overweight or obese



As I told my friend, Jade, who shared this on her wall:

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.

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

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