75 years of lipedema: treatment depends on your funds

By Tatjana van der Krabben

Lipedema was discovered 75 years ago. I would like to say we’ve come a long way, but that wouldn’t be entirely true. Still few doctors doctors are informed, few doctors are informed about treatment options, few clinical trials have been conducted and the causes are unknown. Even the acknowledged conservative treatment options, like compression, manual lymphatic drainage, connective tissue massage and liposuction are not necessarily covered.

I can’t complain myself: in the Netherlands I at least get my compression and manual lymphatic drainage covered. But the liposuction came out of pocket. The gym at the local physical therapist’s practice, where I prefer to train because they at least know a little bit about lipedema and plenty about adjusted, safe workout programs is also not covered. Lipedema is ‘not on the list’. Now if I got bigger I could get it through health insurance on grounds of obesity. Wouldn’t we want to prevent that?

Then there’s the recommendation to eat organic, unprocessed, fresh foods as much as possible. Gluten-free and sugar-free. Although this hasn’t been researched, it has gained support over time and based on personal experience no argument here on the scientific evidence part. But that sort of food is more costly and often requires additional travel to farms or larger towns to even get it. That’s more cost. The same applies to the various supplements, either generally recommended or based on blood tests. Even when found through bloodwork this doesn’t necessarily imply the needed supplements are covered.

Thankfully I was able to come up with the money to exercise at the preferred place, can get a lot of organic produce, in part because of my in-laws’ vegetable patch where they never ever spray. I also got liposuction when I felt I needed it. My nest egg was gone, but at least I got to have the treatment. I benefitted. I need less of the covered care. Some sweet deal for my health insurance. I can work more and disability is not an issue for years to come - you’re welcome, government.

But what if you don’t have the sort of income to make that happen or a nest egg? What if you have been muddling through life with this unrecognized ‘thing’ that got your clothes size to go up and your energy levels to go down? You cut back on your work hours or changed jobs to match your energy levels. Your income decreased along the way.

So what did 75 years of ‘knowledge’ about lipedema get us? If you can pay for it, you can advance your health. Of course there are some low budget things you can do and once you figure out a safe workout routine you could do it from home, at the park or at a more affordable gym. Maybe you could grow some veg yourself? Let’s face it: liposuction doesn’t cure lipedema, but it sure is the fastest way to get a lot of improvement. But there’s no clever DIY alternative to liposuction. Saving up for liposuction sadly is an illusion for many. So now we see more and more attempts at crowdfunding to make liposuction possible.

Our valued fellow blogger Christina Routon is facing the same challenge. She has worked on her diet, her workout regime and works on reducing stress. Her body however, is not playing nice and is telling her she needs to take another step if she wants to see any more improvement. She has also started a crowdfunding page to work towards liposuction, but it’s hard. I see many similar requests on social media, which also implies a weird type of ‘competition’. The fact it has come to this saddens me. We need medical coverage and affordable care for lipedema. And we need it bad.

Christina is a hard worker with a creative soul and a big heart. I hope she makes it.

More information about Christina’s crowdfunding efforts:
http://www.gofundme.com/lipedema-surgery
http://creativelifeenterprises.com/fight-lipedema-t-shirt-campaign/

The Point of June Awareness is Awareness

By Maggie McCarey

Lipedema June Awareness month is  tantamount to October’s Breast Cancer Awareness 5-mile run to raise money for research.  We and our families unite under one banner against a common enemy to raise awareness and funds for lipedema, an epidemic that affects millions of people worldwide. We spend endless hours together in committee, organizing and planning for the entire year. We network throughout the year and maintain a base of outside support: benefactors. We allocate the proceeds of our hard work to agencies that apply for grants made available from the monies we have collected. We have oversight over them. Our decisions each year evolve from  the successes and failures of past years.  Or, that is what it was meant to be: NOT the free-gifts-and-raffles after party of a game never played that it has become.  
 

   As a retired pastor, I have learned by trial and error that there are things that work and things that don’t work in the life of a volunteer organization.  Things that work have the wind behind them.  They grow, like a person’s lifetime of experience, into something that defines itself by the good work it accomplishes. For example, I had a shelter in Alaska for villagers who were stranded or whose family member was in the local hospital. There were many poignant moments. One snapshot: the lingering death of a young native woman on a mattress in a corner above the sanctuary while her children played amid donated clothing and her mother sewed eskimo dolls in half-light. When I left, the shelter closed because it was my idea, my implementation, my back-breaking work, and my success or failure.  

 

     On the other hand, I have been involved in things that took hold and still evolve year after year, though I and others came and left.  These good ideas became good programs with my support and continued to grow without my support.  One example, is a seven-year-old family-style dinner for an entire community that now serves upwards to 300 people every week.  It started with a few dozen poor and needy people at the table. After 6 months it still had the same couple of dozen poor and needy people.  I wanted to give the dinner up because I received a lot of backlash from the elect, and therefore, diminishing faith that the rich and middle-class would cross lines to share meals with the town’s poor, but a committed volunteer said, “Give it one more week.”  Her faith breathed life into a beautiful idea that became flesh. She is still there, and all the people who would not cross social lines, including the poor, now cook,  serve, eat and clean up together after the community meal. 

   Activism also bears fruit. A young peace corps worker from that same community dinner town went to Koka Toga, Africa. She pledged to her village that she would build a much needed hospital for the region. She ran out of money before the hospital was finished, but she didn’t run out of love. She refused to leave Koka Toga until the hospital was built. Inspired by her, my youth group sponsored a drum circle workshop followed by a lasagne dinner and free concert for their town. The huge church was filled with townspeople, all of whom were given drum sticks that they played on the backs of pews while the people of Koga Toga Africa played with them on the other side of the world.  The money to finish the hospital was raised in two hours that night. The hospital was built. Lives are now saved there every day. Thirty-fold. One lost, shy teen in my group found his voice in drumming and  became a percussionist, and  the other teens grew up seeing the power of community in action, sixty-fold. The backs of the pews are softly dented from the pounding they took; evidence of their story of sacrifice and commitment to a cause greater than their everyday purpose. One-hundred-fold. 

      Working for a cause is life-changing and life-sustaining.  It is synergistic, meaning that the whole is more than the sum of its parts, and it lives as long as it is tended to and cared for.  It produces fruit. Otherwise, it becomes a part of the tradition of people who hold onto it because they don’t like change. The Christmas advent ring is one of those nostalgic traditions of the church. It is not a sacrament, though people have destroyed each other over it, many times over.  No one knows and no one cares that the advent ring began in Germany when a pastor in charge of an orphanage got tired of the children asking how many days were left before Christmas so he put candles on a wagon wheel and lit one every day. It was magical for the original orphaned children. Now rigid interpretation, number, order, and proper color  have been added to the ring. This is the absolute definition of institutionalizing irrelevance, but it holds no magic for children eagerly awaiting Christmas.  

This is sadly what  June Awareness Month is in danger of becoming. Its history and reason for being are already lost, and it is becoming a commemorative little feel-good substitute for true life-sustaining change. We have not achieved our purpose. We have not worked hard enough to unify once a year for a cause greater than out own take on lipedema. We need an ice bucket year. 

     My favorite story about June Awareness month is one I don’t want to be forgotten. One year, the Lipedema Ladies in Britain rented an open air sightseeing bus. They bravely went around London with a megaphone, calling attention to lipedema. There were fewer in number than hoped for (There always is at first), but, in my mind, this memory of a handful of determined women expresses the true meaning of June Awareness. They stood publicly, a handful of committed sisters,  and identified themselves for the world to see because they wanted to make a difference in the lives of women who had not yet hears of lipedema. How much internal change had to occur within those women for them to make their bodies public object lessons, I can only imagine. These Brits are your bar, ladies.  I say: “June Awareness has run its course. Let it go.” But, I also ask the question: Are there women who will step forward and commit to the challenge of the following statement, “Give it one more good year.”