Winnipeg woman shares story of diagnosis and road to recovery from lipedema

After decades of not knowing why she was in extreme pain, Angel Anderson finally received a diagnosis for lipedema at age 48.

“It was a frustrating diagnosis because I didn’t find out from my doctor and I had to explain it to my doctor,” said Anderson. “Even then, I had to explain it to my doctor and … I didn’t feel like she really understood it.

“I had been seeing her for years … She had seen my legs through examinations, and (it was) so frustrating that she didn’t recognize it or diagnose it for me.”

Lipedema is an illness that causes painful fat buildup and swelling in the arms and legs, leading to immobility. Anderson, now 51-years-old, says she likely had the condition for decades before a vascular specialist finally diagnosed her with stage 3 lipedema.

“It’s horrible to think about what could have been,” said Anderson.

Lipedema, which in no way is related to obesity and affects 1 in 11 women and in rare cases affect men, can be treated with conservative measures like compression garments and specialized massages to help drain fluid buildup in the limbs. But when the disease progresses further through the first 3 stages, before end stage lipedema, multiple invasive surgeries are needed.

Related: Organization aiming to help people living with lipedema find resources and healthcare launching in Canada

Anderson said she couldn’t find the treatment she needed in Canada, so she had to travel to Germany four times over the course of 9 months. She says the experience, though difficult and painful, has been completely life-changing.

“On my last trip going to Germany, I spent a few days in London before just touring around on my own. In one day I did 19,000 steps. There’s no way pre-surgery that I could have done that.”

Her fourth and final surgery, which took place in early March of this year, removed 14 litres of lipedema fat buildup from her body.

“Just being able to walk so many steps and everything is easier because my legs are less heavy … that feeling is not lost on me, still.”

Anderson said she owes her health today to the large community of lipedema patients, families and advocates across the world who have not only helped her with gathering knowledge and information to treat her diagnosis, but who actively played a role in her care. She says throughout her multiple surgeries in Germany, many family members of others going through the same procedures took her under their wing as she travelled alone. She says this is the typical experience of the community, who goes out of their way to help each other as resources elsewhere can be scarce.

“The community is so important for questions and answers. I am a big part of the online group so if someone asks a question, there’s so much stress and anxiety leading up to surgery, we have so many questions,” Anderson explained.

“So many women (are) learning online about lipedema and then taking print-outs or asking their doctors to bring up a website or something, so that they can show them what lipedema is.”

Anderson said she wants others to know about the condition, so people can get diagnosed earlier and people supporting those with the condition can be supported as well.

“As someone who’s been 4 times for surgery, if I can answer their question, I’m gonna take a minute and answer their question just to help them set their mind a little bit at ease,” she said.

Now, four weeks since her last operation, Anderson says she’s ready to live without the weight that’s been holdiing her back over the last thirty years, and help others who are still struggling with the disease.

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