Hi friends!
Living with lipedema can be a challenging and often isolating experience. Many patients struggle for years to get a proper diagnosis, let alone find effective treatments or insurance coverage. But there’s strength in numbers, and it’s time for the lipedema community to come together and make our voices heard!
In recent years, we’ve seen significant progress in raising awareness about lipedema. Social media influencers, like myself have bravely shared their stories, helping others feel less alone and more understood. I found out about my lipedema due to social media friends who were willing to help me figure out my condition. The Lipedema Foundation have been funding crucial studies to advance our understanding of the condition. Organizations like the Lipedema Project, independent doctors and surgery centers, and influencers who have taken it upon themselves (thank you!) to make educational resources in the US, have worked tirelessly to provide resources for patients and healthcare providers alike. However, despite these valuable efforts, we’ve lacked a unified voice with a strategic approach to advocate for the needs of patients, caregivers, and medical professionals. Until now, there hasn’t been a single organization bringing all these elements together to create a powerful force for change in the lipedema community.
Why is unity so important for those affected by lipedema? Let’s break it down:
1. Consistent Quality Care
Right now, we have a few sets of diagnostic criteria floating around from different organizations with different motives. By working together, we can push for standardized diagnostic criteria and treatment protocols. This means better care for patients, no matter where they live or which doctor they see. When medical professionals, patients, and caregivers share knowledge and experiences, we can identify best practices and advocate for their widespread adoption.
2. Insurance Coverage
One of the biggest hurdles for lipedema patients is obtaining insurance coverage for necessary treatments. Many women find themselves fighting lengthy battles with insurance companies, often having to educate them about the condition itself. Many women also get their surgeries approved, and then get surprise bills for the operating room, post op care, the anesthesiologist, etc. and still bear a terrible financial burden. On the flip side, surgeons find themselves operating with the expectation of a preapproved surgery being paid, and then find the insurance companies aren’t even paying them enough to cover expenses! This is a bad situation for all. By uniting our efforts, we can present a stronger case to insurance providers and policymakers, demonstrating the medical necessity of lipedema treatments and pushing for comprehensive coverage.
3. Awareness and Understanding
Lipedema affects an estimated 11% of women globally, yet it remains largely unknown to the general public and even many healthcare providers. By amplifying our collective voice, we can raise awareness about lipedema, its symptoms, and its impact on daily life. This increased visibility can lead to earlier diagnoses, better support systems, and reduced stigma. I mean can you even imagine going to a doctor for the first time and having her recognize your condition and be empathetic about it, or being at the beach and NOT getting stares because people know it’s a disease, maybe even offering empathy? That’d be amazing and it will happen one day.
4. Research and Training
To improve lipedema care, we need more research and better training for medical professionals. Right now, there is limited research ongoing, thankfully due to the efforts of grants by the Lipedema Foundation, and schools like Vanderbilt University. However fellows programs to train surgeons and specialists need to be funded well enough to cover expenses and encourage students to learn about lipedema. By coming together as a community, we can advocate for increased funding for lipedema studies and push for the inclusion of lipedema in medical school curricula. This will lead to advancements in treatment options and ensure that future generations of doctors are better equipped to recognize and treat lipedema.
5. Emotional Support
Living with a chronic condition like lipedema can take a toll on mental health. By fostering a strong, united community, we create a network of support for patients and caregivers alike. Sharing experiences, coping strategies, and success stories can provide hope and encouragement to those who may feel alone in their journey. Knowing I’m part of a bigger group and that I’m not alone has changed me personally for the better in many ways.
Exciting News: The American Lipedema Association
With all of this in mind, I’m thrilled to announce the formation of the American Lipedema Association! This new organization is dedicated to uniting patients, caregivers, and medical professionals in the fight for better lipedema care, awareness, and support.
The American Lipedema Association will work tirelessly to advocate for increased insurance coverage, support ongoing research and training, and provide resources for both patients and healthcare providers. By joining forces, we can create a powerful voice for change and improve the lives of those affected by lipedema.
Together, we are stronger. Join us in this exciting new chapter for the lipedema community, and let’s make a difference! Membership is $15 per year for patients and caregivers, and $50 a year for organizations. But…money should NOT be a factor. Patients who need financial scholarships can join. Just email them at AmericanLipedemaAssociation@gmail.com with your information. It’s that important.
I’m proud to be a founding member of the ALA, and dedicated to doing my part, alongside all of you, to make a lasting impact for the lipedema community.
Susan
