June has always been a special month for me. For one it is my birthday month (yes I celebrate all month long), and two, it is LIPEDEMA AWARENESS MONTH!
What is Lipedema you ask?
Well, initially we were told that it was a painful fat disorder that was first diagnosed in 1940 at the Mayo Clinic. If you google the word I am happy to say you will now find lots of information about it, but that was not always the case.
I was diagnosed in 2007, and at the time little was known, there were no support groups, and very little was known. Today it is more widely known and there are lots of webpages, instagram accounts, and Facebook support groups that you can join to find others just like you.
I believe last year was the first time I heard Lipedema was considered a connective tissue disorder. I'm still investigating that, but it makes a lot of sense.
https://www.lipedema.org/ is one of the websites that will give you a lot of information, and they even have a brochure you can print out to read and/or share. Some of us bring them to our doctor appointments, as most doctors sadly still do not know what Lipedema is, or how to treat it.
During the month of June I will do my best to spread awareness. I do it to reach as many people as I can who might have the condition and not know they do, or what it is, or what they can do. I also do it to help shine a light on the need for medical professionals to get more training (it is said they get less than 15 minutes of instruction on the lymphatic system, let alone Lipedema during their schooling to become a doctor).
If you have questions, ask in the comments and I'll do my best to answer all your questions, and post more information that might help answer your questions, and let you know what you can do if you feel you might have Lipedema.
Know you are not alone, and that we have a voice through social media to make real changes like we have seen over the past several years.
You should also know that there are companies out there that care a great deal, and they come up with products like graduated medical compression (I am a brand ambassador for Juzo), and pnematic pumps to help move lymphatic fluid.
I recently was contacted by Medical Solutions Supplier, a pnematic compression pump distributor of Lympha Press, who was interested in interviewing me for a LE&RN article. I was interviewed by Brenda Viola and she liked our interview video so much, she asked if she could share it as part of June Lipedema Awareness.
Here is that video, thank you Brenda and Medical Solutions Supplier for helping us spread the word, and get others diagnosed sooner, and able to get started on a treatment plan!
I loved hearing your story, Pattie, and am even more excited to share it with many who will be inspired!
ReplyDeleteThank you! spreading awareness is what it is all about, appreciate your efforts!
Delete