Thursday, May 28, 2015

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/

Saturday, May 23, 2015

The Point of June Awareness is Awareness

By Maggie McCarey

Lipedema June Awareness month is  tantamount to Octobers 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 dont work in the life of a volunteer organization.  Things that work have the wind behind them.  They grow, like a persons 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 towns 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 didnt 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 dont 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 dont 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.

Wednesday, April 1, 2015

Lipedema Sister Laura Deese Reaches Out

by Christina Routon

Laura Deese, a fellow Lipedema sister, has reached out to lipese.com through our Twitter page. She's also reached out to her local community by sharing her story with Channel 5, WNEM, near her home in Iosco County, MI. You can see the story reported by WNEM here:

WNEM TV 5 Laura Deese

It took Laura 14 years to discover she had lymphedema and she was recently diagnosed with lipedema last November.

I'm going to be contacted churches in Laura's area of Iosco County, Michigan, to see if anyone is able to help widen her door and possibly has a doctor in the congregation that would be willing to be her primary care physician. I'm also going to include some information about lipedema and lymphedema when I contact them.

If anyone is near Laura in Michigan and can offer help, you can contact the TV station at wnem@wnem.com or call them at 989-758-2044.

This is a disorder that we keep hidden for many reasons, including embarrassment, judgement, and fat bias. Laura is very brave to reach out on television and social media to ask for help, especially when the disorder reaches the later stages. Let's let her know how much we care about her.

Thursday, March 26, 2015

Dutch lipedema petition just won’t fly

By Tatjana van der Krabben

In December 2014 José Boekelmans, an edema therapist who also has lipedema, started a petition to rally up support to have the costs for liposuction in case of lipedema covered by health insurance in the Netherlands. She had the support of 2 TV personalities, connected to the TV show Geld maakt gelukkig (Money can make you happy). In this show people can present their case for which they need money and what would truly make a difference in their lives. The studio audience then votes how a sum of money is to be divided between the three candidates.
José put herself out there to get funds for liposuction treatment, but also to point out how ludicrous it is that a treatment for medical purposes is not covered. Just because it was originally invented for cosmetic purposes, which is currently being held against lipedema patients who seek ways to improve mobility and reduce pain.
The co-hosts of the show shared her frustration and sense of injustice, but felt lipedema patients also needed to step up and fight harder for coverage. José proceeded by starting this petition.
 
The idea was to present the results during the elections in the Netherlands, earlier this month. Right after the show she got a fair number of signatures. Even if you don’t read Dutch: if you click on the link, the little graph on the right speaks volumes. Soon the number of people signing plummeted. By the time the elections came, there was not much to present to members of parliament, with not even 2000 signatures.

You can argue the job was a little big for just one person and not even the TV personalities managed to create more media coverage around this. But…when she asked for help nobody offered. Many were reluctant to even share the petition on social media. And so the petition didn’t fly.

Many patients can’t afford liposuction, but would like to have liposuction treatment. Because of this I would expect a little more eagerness in trying to round up signatures. If we can’t muster the courage to convince our friends and family to sign, how can we expect complete strangers to be understanding and supportive of our struggle with lipedema? Unfortunately we will need to put ourselves out there and raise awareness, if we want recognition, coverage of medical expenses and respect. We need to get the word out there. Even if that’s scary.

Maybe it’s not too late. If you’re from the Netherlands and see the potential of this petition… Well, just think about it. It could still work.

Tuesday, March 17, 2015

Liposuction with lipedema: Q & A with dr. Amron

We’ve covered liposuction in the past. There are still many questions, but we're no doctors and can only speak from experience. Therefore we’re proud to announce that we found dr. Amron willing to answer our questions. The ladies at Lipese Challenge, our chatgroup on Facebook, were given the opportunity to send in their questions. Below you find dr. Amron’s expert view on the issues raised. At the bottom of the Q&A you can read more about dr. Amron and his background.

1. Does medical insurance cover liposuction?
Insurance companies in the United States are very difficult to work with, and for the most part, they’re not covering liposuction surgery for lipedema. Several patients around the country have been successful getting their surgeries covered, however, most of this comes from the patient’s persistence after surgery to seek reimbursement.

When patients are successful, it’s typically through gathering a lot of support and recommendations from numerous physicians they’ve seen – these doctors explain liposuction was medically necessary in their cases. So, it would be helpful to seek medical specialists in this regard, as well as have complete reports from the physician who performs the surgery.

Right now, the majority of the general public has never heard of this disease, and even a lot of physicians and surgeons haven’t either. That being said, insurance companies aren’t recognizing it as a unique condition that needs to be covered. Hopefully things will change once there’s greater recognition of lipedema.

I’m working to increase public awareness of lipedema in various ways, with hopes it will soon translate into insurance companies recognizing it as a disease that needs to be covered, so no one is forced to suffer due to financial constraints.

2. Describe the procedure you use for liposuction on patients with lipedema.
Curing lipedema is extremely rare, and various medical treatments have been met with limited success. The only real possible cures, which I perform in my practice, are water-assisted liposuction (WAL) and tumescent lymphatic-sparing liposuction, which many surgeons are reluctant to perform.

There are several advantages to performing tumescent lymphatic-sparing liposuction to treat lipedema patients. First, it’s much safer as an approach, and as mentioned, it’s lymphatic sparing. Second, it helps prepare the tissue by reducing the bleeding during the surgery and getting a much more pure removal of the fat. Lastly, it’s very important in terms of patient positioning, which is vital to lipo-sculpture, especially with lipedema patients.

The reasoning for many surgeons’ reluctance to treat lipedema with liposuction is likely because these are very complicated areas we’re dealing with. The calves, ankles and anterior thighs are areas most liposuction surgeons who do liposuction tend to avoid, even in non-lipedema patients, as these areas are very prone to irregularities and are technically very difficult to treat.

3. You offer a procedure that is touted as lymph sparing. What makes it lymph sparing?
One of the most crucial elements of liposuction for lipedema patients is that the surgeon approaches it in a lymphatic-sparing way, with respect and care for the patient’s deeper lymphatics.

I strongly believe doing the surgery under purely tumescent local anesthesia is the best approach for not only lipedema patients, but for all liposuction patients.

When a surgery is performed under local anesthesia, the surgeon is forced to stay only within the subcutaneous layer of fat between the skin and muscle where there are no major lymphatics.          

Damage to the lymphatic system usually occurs when the patient is under general anesthesia and the surgeon has gone into areas that are deeper than the anesthesia allows.

However, under local anesthesia, that situation is almost impossible. If the surgeon were to go outside of the field of anesthesia, which is the fat layer, the patient will absolutely be able to feel the surgeon. So, by doing it under local anesthesia, it really is lymphatic-sparing because the surgeon is forced to stay within the appropriate layers of the body, ensuring there’s no damage to a person’s lymphatics. 

4. Can liposuction be performed on patients with stage three or four lipedema, or even when they have lipo-lymphedema?
Yes, patients with stage three lipedema, stage four lipedema and even patients with lipo-lymphedema can have liposuction. However, these patients need more specific care both preoperatively and postoperatively.

It’s important to wait longer between surgeries for stage three and stage four lipedema patients, as well as for lipo-lymphedema patients. In stage one or stage two patients, I’ll perform sequential surgeries fairly close together.  But, for patients who have more advanced cases, I’ll wait about four weeks between surgeries, and sometimes possibly a bit longer. It will always vary depending on the case and the patient.

Also, with patients who have more advanced lipedema, it’s really crucial to properly bandage them with compression therapy after the surgery. Furthermore, I strongly encourage and recommend my patients have proper care for manual lymphatic drainage (MLD) by Vodder trained lymphatic specialists.

5. What are your aftercare procedures for lipedema patients who’ve had liposuction?
I’m still continuing to refine my patient-aftercare technique specifically for those with lipedema, but it all depends on the stage of condition. For stage one patients, most do completely fine with the typical compression garments for liposuction. Certainly MLD can hasten the resolution of some of the swelling, but it’s not as vital as it is for patients with more advanced stages of lipedema.

Stage two patients are usually bandaged and wrapped right after surgery, and follow up with a trained MLD therapist for compression therapy thereafter. Postoperative care is essential regarding patients recovering from the third stage of lipedema, or lipo-lymphedema, and I work very closely with Vodder trained MLD specialists.

As you move into the third stage of lipedema or lipo-lymphedema, it’s important to wait approximately four weeks between surgeries. Postoperative care at this point in the disease is extremely important, and I work very closely with Vodder trained MLD specialists.

6. Does the fat grow back after liposuction? Is there something we can do to prevent regaining fat on the legs?
With my aesthetic liposuction patients, my answer is normally a flat-out “no”, the fat will not return to the areas where liposuction is done properly. However, in lipedema patients, I do think there’s potential for the fat to return. In my experience treating lipedema with liposuction, I’ve never seen it happen to any patients of my practice. However, I’ve heard stories from other patients about fat growing back. It’s possible that the procedure was not done as completely as it should have been, and that left fat in the body to duplicate.

Ultimately, this question cannot be answered with complete certainty, but there is a possibility that lipedema patients could theoretically see fat regrow in areas if liposuction surgery is not done properly.

7. What is the long-term effect of surgery? Are there reports of lipedema patients 5-10 years after liposuction surgery?
If liposuction surgery is done properly, patients will not have any more of the diseased fat in their body, and they will continue on with normal lifestyles.

In lipedema patients there’s an aspect of hypertrophy, which means growth of new fat tissue. That said, in theory the fat could come back years later, but since I’ve known of lipedema, I’ve never seen the fat return.

Certainly, if there’s a component of lymphedema along with the swelling that comes along with lipedema, I do expect the fat component to return. For your average lipedema patient, however, the fat should not return in the long run.

I’m fairly certain there are no studies in the United States addressing the long-term benefit of liposuction for lipedema, and this is research that certainly needs to be done.

8. Should liposuction leave women with sagging skin, what are our options to fix that?
Whether it’s for lipedema or not, liposuction should always cause tightening of the skin. However, when someone has a lot of redundant loose skin, the surgeon has to be careful of how much retraction of the skin he or she is going for.

After liposuction surgery, if someone already has a lot of loose skin to begin with, there may be a need for a subsequent body lifting procedure, such as a thigh lift. It’s very important to consult with a surgeon who has vast experience in body lifting procedures, and has an understanding of the specific limitations of a lipedema and/or lipo-lymphedema patient.

9. How young can liposuction be performed for lipedema patients?
In most patients, the disproportionate storage of fat is already set in place in the middle of their teenage years typically, after they’ve started their menstrual cycles. That’s generally the youngest age I will perform liposuction on a patient, and I would apply that age range to lipedema patients, too. If lipedema has been already been diagnosed and there’s disproportion in place, quite honestly, the earlier it’s targeted, the better. This will prevent it from advancing to its later stages.


About Dr. David Amron
Dr. David Amron, M.D., is a board-certified dermatologic and cosmetic surgeon with two decades of experience and specialization in all aspects of liposuction surgery. He is medical director of the Roxbury Institute in Beverly Hills, CA.  Amron has an international reputation for excellence in complicated liposuction cases and revision liposuction surgery. His unique approach to difficult-to-treat areas, as well as lipedema, has been extensively featured in the media. His years of surgical experience, specifically with liposuction, along with his skilled artistry and refined judgment, are an essential part of the care he brings to the treatment of every lipedema patient.

Passionate about education, Amron regularly publishes articles and videos, and has contributed content to various medical textbooks and media outlets including the Wall Street Journal, Los Angeles Times and Cosmopolitan. Entertainment Tonight calls Dr. Amron “Guru of Liposuction,” and he’s been featured on programs such as Discovery Channel, the Today Show, Good Morning America, CNN, BBC, 60 minutes Australia, Extra, Inside Edition, VH1, ABC News and more.

Amron attended both UCLA and UC San Diego, where he received his bachelor’s degree. After earning a medical degree from Albert Einstein College of Medicine in New York, Amron returned to Southern California, where he continued his residency at UC San Diego and research fellowship at UCLA.

Stay in touch with Dr. Amron by following him on Twitter, Facebook and Google +

Be sure to stay educated and informed – check out Dr. Amron’s RealSelf profile, YouTube and issuu for lipedema and liposuction blogs.

Monday, March 2, 2015

When art becomes about fat bias

By Tatjana van der Krabben

On February 27, 2015 Leonard Nimoy passed away at the age of 83. My inner nerd was incredibly sad. He was an icon. No, I take that back. He is an icon. In celebration of his life and work many people shared samples of his work, quotes and images of him. I had no idea he had been this talented and versatile. Through Facebook I learned he also was a gifted photographer and that he had a loving eye and deep respect for curvaceous women. I’m sorry I missed that before.
Author, photographer and blogger Sally Wiener Grotta posted images of his work on Facebook: artful black and white photos of nude women. Curvy, full-figured nude women, that is. Facebook took offense. This sprouted a lot of debate, since many other things do slip past the Facebook police. Ranging from celebrity nudes to live footage of torture and murder. This time Facebook had objected to art, in part inspired by classical paintings.

Sally thinks it was about the curves involved: fat bias. I agree. She did not stop there, but objected. She explained events in a blog and reposted a photo from the series of black and whites by Nimoy on Facebook. As I write this her new post has been up and untouched for 9 hours now.
Please read Sally’s blog Is Obesity the New Obscenity in which she explains the events in her own words.

I salute Nimoy for his inclusive art and Sally for not backing down. Despite having to say farewell to a gifted man and Facebook showing a less likable side, this has been a good week.

Monday, February 16, 2015

Just Be My Friend

By Christina Routon

Hi, friend! Yes, it's good to see you too. How are you? It's been awhile, hasn't it.

Let me order my chicken salad - no croutons, please - and my unsweetened tea and we'll visit for a while. I want to hear all about your job, your friends, all the exciting things in your life. And I'm sure you want to hear about mine.

How are my legs? They're fine, thanks. Yes, I still have lipedema. Yes, I'm still wearing compression hose. Nope, no cure, but research is beginning, awareness is growing.

Am I eating organic?
Do I know what the dirty dozen list is?
Have I given up dairy?
Have I given up sugar?
Have I given up all grains, not just wheat?
Have I tried Paleo / Weight Watchers / Jenny Craig / HCG / Medifast / and so on?
Have I given up soy?
Have I given up nightshades?

Because if I do what you tell me to do (even though you're not a doctor / nutritionist / or even remotely qualified on the subject of diet, exercise and health) I can beat this thing?

Whoa, there, friend. Stop and take a breath. Yes, please stop.

I've lived with this diagnosis since 2012. I've had this disorder since I was in my early teens. Let me assure you, since you're so concerned for my health, that I've tried every diet known to man - and some I made up - over most of my adult years. The two years before my diagnosis I lived on chicken and broccoli and was at the gym six days a week. It took me two years to lose 60 pounds. That's when I knew something was wrong, and that's when I started looking for answers.

Now, friend, I'm not saying this to justify anything about my diagnosis or my life. I'm just telling you, right now, please don't go there with me again. Because what I also carried with me for most of my life is guilt. And shame. And blame. From family, doctors, strangers around me and even well-meaning friends like you.

I have lipedema, and it's a real condition and it's not going away by giving up dairy and grains and nightshades. If it were that simple I'd be cured by now.

So, friend, I appreciate your concern about my health, but what I eat or don't eat isn't up for discussion or debate.

No, I don't want your help. Not if your help is diet advice on a condition you know nothing about.

What do I want from you? I want you to be my friend. I want you to love me. I want you to support me. I want you to listen to my crazy adventures in this life and I want to hear yours. I want you to be understanding if I need to walk a bit slower or rest more often than you. I want to enjoy lunch and ooh and ahh over the baby's pictures on your phone. I want you to cry with me when life sucks and laugh with me when life is wonderful. I want to do the same with you. I want to do life together.

Just be my friend.