Hi friends,
As we all know, many women have challenges and, often years-long delays in getting a lipedema (lipoedema) diagnosis when they visit their personal clinicians. Often, we come armed with brochures, copies of the Standard of Care for Lipedema in the US, and other materials with us (including my first book, Jeans on a Beach Day), only to get a litany of responses. Those of us who are very lucky, have either a physician who knows about lipedema and will support us, or as in my case, a PA who hadn’t heard of it, but was responsive to the materials I brought, and actually did research to help me get to the right referrals. Those who are not so lucky have other diagnoses put in their chart, or are very often, told to go home and lose weight.
One of the reasons, I believe that we have difficulty getting a diagnosis is because there isn’t an ICD (International Classification of Diseases) code in the US specifically for lipedema. Doctors use a variety of codes in our charts when diagnosing lipedema patients, such as R60.9 – Swelling/edema, E88.2 – Lipomatosis, not elsewhere classified, E65 – Adiposity, localized, and sometimes Q82.0 – Chronic hereditary edema/lymphedema, according to the Lipedema Foundation.
But there’s good news! In 2019 the World Health Organization put a code for Lipoedema (the international spelling of lipedema) into its ICD-11 (the eleventh revision) codes. It is EF02.2. This version of the ICD hasn’t yet been adopted in the US, but it will be soon enough.
What this means is that once your country adopts using the ICD-11 code versions, there will be an option available for them to select EF02.2 as a diagnosis. It is a FANTASTIC idea to come to your appointment armed with this code in hand, yes, even if you’re in a country that doesn’t use ICD-11 just yet. The existence of this code gives even more legitimacy to the disease when a doctor sees it listed in their available diagnosis drop down box in their charting software.
Here’s what the code says, “Lipoedema is characterised by non-pitting diffuse “fatty” swelling, usually confined to the legs, thighs, hips and upper arms. It may be confused with lymphoedema. Lipoedema may also occur in the scalp.” (source: www.findacode.com).
I’m hoping that when doctors have a code to select, and more information in hand, it will shorten the time to diagnosis for so many women who are waiting on that diagnosis, and referral to more help, and to feeling listened to and believed.
Have a fantastic day, and keep up the hope, friends! Every little step represents a step closer to early diagnosis, treatment, and eventually cure.
Susan
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