Hi friends,
If you follow many of the facebook support groups for women with lipedema, you’ve probably seen a new movement in our ranks: We are doing writing campaigns to educate doctors and clinicians who have not responded well to our requests to diagnose or discuss lipedema. In the first weeks alone, I completely depleted my stash of Jeans on a Beach Day, sending personal notes to doctors whose names were submitted by patients who’d had a not-so-great experience. I hope that just one doctor will look at the Standard of Care for LIpedema in the US and have a change of heart, and decide to consider that lipedema is a real condition. That that one doctor would recognize lipedema in her future patients with the symptoms and know what to do. Baby steps…
But I want to take a minute to celebrate the good and amazing things, leaps in research, education efforts and the love and persistence that I see in the medical community that is dedicated to serving and treating lipedema.
I’ve been so honored to get to participate in the Lipedema Education Group these past few weeks, not only as a patient, but as someone with a significant social media presence dedicated to quality of life for lipedema patients. There’s now a website blooming (linked above) that is going to grow into a wonderful thing that will springboard into a set of consistent information. While I won’t get into the details of the discussions on the team meetings, one thing I can comment on is that this team of people love their patients. They know their patient challenges and needs and they have such incredible compassion.
Several of the therapists on the team have youtube channels and post informtion regularly, showing us how to care or self, showing other therapists how to treat us, and showing us how to even do things like yoga designed for us. These folks are wonderful. They work long hours, they get emotionally involved, they get passionate about new treatment and diagnosis options. They persist…for us.
So while many of us with lipedema have had some bad experiences in the past, let’s take minute to celebrate, and thank those professionals that are really there trying to find a cure, and treatments that will change our lives, and the lives of our daughters, for good.
The Lipedema Education Group (did they realize the acronym for this is LEG?) is working to develop and publish care guidelines for medical professionals, people with lipedema/lymphedema, and their friends and families. The names of the professionals involved are on the link above. If you’re able, it’d be lovely to write a note thanking these people for their choice to use their profession to help us.
Until next time, remember life is for living! Get out there and do something amazing, even if it’s one small thing.
Susan
