It seems like every month is an awareness month for something or another, but Lipedema awareness month is special and different than any other awareness campaign, in my humble opinion, because in our case, awareness can result in real and significant, life-changing action. The reason is our disease goes undiagnosed for years-decades, for some, because of lack of awareness from the medical community and from patients, who know something is wrong, but don’t know if it’s caused by disease or obesity. We actually have a lot to gain by folks around us being aware of lipedema.
This lack of awareness results in misdiagnoses and no diagnoses: the result of this can lead to years of believing the lippy areas were caused by laziness, bad diet, poor lifestyle, and are untreatable. The other result of this is the disease is left untreated, and can progress to situations where our sisters are even immobilized. Psychologically, our sisters can find themselves depressed, hopeless, and sometimes even suicidal.
In fact, a presentation given at the Fat Disorders Research Society in 2016 by Dr. med. Joseph Stutz revealed research showing that 8% of lipedema patients had attempted suicide at least once, compared to 2.2% of unaffected females attempting suicide. This rate is very alarming and shows that the disease can lead to hopelessness without a plan of treatment. We really need to continue to educate and advocate to save life itself, and quality of life.
Dr. Stutz’s Presentation at FDRS 2016
Additionally, undiagnosed lipedema can lead to eating disorders. The same research presented above shared that as much of 75% of lipedema patients have had an eating disorder. As an example, I often share the story of my own mother, who has lipedema in her legs. Despite weighing around 100 lbs in high school, she went on a very restrictive diet for two years, eating a boiled egg and tea each day. She passed out repeatedly and her legs remained unchanged. She was prescribed diet pills while pregnant and lost twins as a result. She’s in her 70’s now and isn’t a candidate for surgery due to other health concerns, but shares that if she were even ten years younger, she’d be having surgery asap.
For me personally, I felt alone and very confused as my lipedema started to progress rapidly during a period of intense work-related stress. I had no tools in my toolbox to manage flareups like simple compression, massage techniques, or stress reduction. I hadn’t been exposed to research that correlated hormonal events to flareups and growth (stress releases cortisol, a hormone that triggers lipedea growth in some cases.) I’d been part of an exercise group for a long time, and asked for special exercises to help with my legs, and found really nothing exercise wise helped. I’d gone to my doctor numerous times requesting CT scans, MRIs, exams, blood tests, etc. and we always came up with no reason for my ‘deformed’ legs.
I haven’t shared some of my story publicy, but I will say that lack of awareness has caused issues in the work setting, and I’ve seen discrimination first-hand. Someday I’ll be able to tell the story, but for now, lets just say, we know our work lives are also impacted by undiagnosed and often misunderstood diseases like Lipedema. Let me wrap this piece of the story up by saying discrimination for any medical condition is never ok and I’ve taken very significant steps to educate my work colleagues about lipedema as a result.
I feel so very lucky to have stumbled on a medical professional in a leg brace company, who quickly identified my lymphedema, which led me down the path of learning I actually had lipo-lymphedema (stage 3+ lipedema), and that quickly led to opening the internet portal of unlimited information, which led to surgical treatment and support.
To bring this full circle, sharing awareness of lipedema is critical. Just being able to see that I’m not a freak of nature, I didn’t cause my legs to grow out of control, and wow – there are SO many women who look just like me, feeling the same struggles, having the same self confidence issues, etc, is so empowering. But to be able to take documented research studies to my doctors at home, educate them, and have them be able to diagnose other ladies and get them to treatment is even better. If we can help one person save her mobility, her self confidence, her inclusion, we’ve really made a difference. If we can help one lady know that she didn’t cause this and it IS ok to wear those shorts because, yes, she’s not the only one, we’ve won a small piece of the battle.
I encourage you to continue to be brave, share your photos and experiences to help others through this crazy thing we call life and help others not feel alone. Please continue to try your best to educate your medical professionals so they can recognize the disease and guide our sisters towards a treatment plan that will be effective for them. And finally, please don’t give up on your insurance coverage. Write those letters, ask again, let the insurance companies know repeatedely, that we are worthy of receiving treatment. The ultimate goal is early recognition, diagnosis and treatment, and someday, prevention. With lipedema affecting primarily women, we know we’re going to have to fight an uphill battle to have the recognition and coverage needed. Let’s continue to band together to do what we can to raise awareness.
