Lipedema captured on film

By Tatjana van der Krabben

On June 14, 2014 a Dutch Facebook group launched a short info film on lipedema at the NLNet conference. It’s in Dutch*, which may very well be gibberish to you, but I want to share with you the story of the making of and the message this group and myself as a member of this group would like to share.

In Augustus 2013 a member of the Lipedema Friends and Info Page started dreaming out loud: what if we could do an information film on lipedema in Dutch, something catchy, to raise awareness. A quick search taught us nothing like that had been made. Yet. And that’s when we got ambitious. It had to be catchy, not too long, provide useful information, have a feel good factor, a message, be suitable to incorporate into a lecture for a varied audience and professionally made, please and thank you. Why this long wish list? We could only – hope to – raise enough budget to do one film and the need for material to educate the public, (new) patients and medical professionals was there. It simply had to be versatile and of sufficient quality to take it places.

After that, like pieces of a jigsaw puzzle, everything started falling into place. Someone knew a professional filmmaker who was willing to help and shared our vision. Someone arranged at work we could use a space and facilities there to shoot the film. One of the members of the Facebook page who offered to help is also a board member with the foundation NLNet for lipedema and lymphedema. One thing led to another and NLNet offered us time at their conference to do the launch there. We formed a work group of four and raised the needed funds through crowd funding among the members of the Facebook page. All members were welcome to pitch in ideas for the film, after which I wrote the script. Then we asked members to participate. We got all stages and different ages represented: sixteen gorgeous ladies. We also made a conscious decision to show our legs anonymously and in motion. You know that distinct look of the back of your knee in advanced cases with that extra padding? You don’t see that from the front and moving images are also more attractive to watch. The film therefore shows the legs from all sides.

Every meeting we came to the same conclusion: we wanted motion, movement, energy! Movement became the theme. We need to move forward and we literally want to keep moving. In its wake came the second point we wanted to make: the value of early diagnosis. Catch it early and you preserve (most of) your mobility, energy and your true figure. Although the “spoon scene” explains how daily activities can drain you, we hoped to convey joy as well. Lipedema may interfere at times, but we certainly have a zest for life.

So far so good, but the only pro in da house on D-Day was the filmmaker. Sixteen women, knowing very well they would also be showing their legs later on and not so anonymously in front of this man. Not to mention eventually seeing it back on a BIG screen. But he worked miracles and approached the topic with great integrity and a little humor. Sixteen women, some already knew each other, others we only knew from Facebook until then, but at the end of the day we had bonded. I think it shows in the footage. A little secret from behind the scenes: at some point our chatting was so loud, we disrupted the filming of a scene in the other room. In the end we all sat in the same room to watch the scene being filmed to make sure we kept quiet for a bit!

Last Saturday with the launch it all came together. The group was almost complete, the filmmaker was present and we all got to watch it together. Afterwards we were asked to come on the stage and Henry Scheer, the filmmaker, gave a heartwarming speech and offered on the spot to also help us with an English version. So Henry, we got witnesses! Just kidding, he’s been a great support throughout. This, and the fact several therapists approached me immediately after to ask if they could use the film in future lectures, showed it was a launch in the true sense. And yes, they can use it. This is what the film is meant to do.
We started with a small snowball and now it’s picking up speed. Carry on little snowball. May you travel far and kick butt.

*English version of the film to follow.

Lipedema and me

By Sylvie Giroux

Have you ever wondered how it would feel to have healthy and beautiful legs? I sure did! More than once! Legs like dancers…slim yet muscular. Being short, I knew I would never have those long legs but I thought I could at least have slim ones. No matter how much calve or thigh exercises I did my legs would remain the same. I just thought I had huge legs muscles!  But as I grew older, I looked more and more like a pear. Had no idea why I was slim on top and this round on the bottom part of me!

To be honest, as long as I can remember, I always had a disproportion between my upper body and my legs. I would bruise easily too and for most of my life, I would try to hide my big thighs and was quite ashamed of them. At times, boys would make hurtful comments, which made me feel even more uncomfortable about they way I looked. I became to feel really uncomfortable about wearing a bathing suit in the summer and started wearing skirts only during the hot season! I was envious of all the others teen girls and what seemed to me their “perfect legs”! Funny I was attracting guys…could not understand why though and credited my killer smile for it!

I did get married in my early twenties, had three pregnancies and the last one was the most difficult for me, health wise since my legs swelled a lot. Since I was pain free back then, I just thought it was something having to do with hormones and that the swelling would go away after the birth. And it did. Many years later, in 2009, after some serious family problems, I ended up in depression and took a medication called Remeron. While taking it, I put on some weight. Even after stopping it...the weight gain continued and my thighs got bigger, my tiny waist was gone and my upper arms got bigger too. I had no idea why this was happening because I was not eating like a pig so I blamed it on the medication! My GP would only tell me that I was getting fat and that I needed to do something to loose weight since I had gained over 35 pounds in less than 2 years....I tried dieting, and nothing worked. To top it off, I felt tired all the time...I can't even remember when I did feel full of energy. I also had lots of headaches.

In October 2011, while at a friend's birthday party, something changed for me! A friend of my dear friend was there as well and he heard me say to a lady friend that I had gained a lot of weight since 2009. He came to me, told me he was a massage therapist who specialized in treating people with lipedema and lymphoedema and he asked me many questions about my legs. Then he explained what is lipedema and suggested I went to his clinic. He said that he was quite sure I had lipedema and I started the Manual Lymphatic Drainage at his private clinic after that. I was not diagnosed by a doctor because here, we don't seem to have any specialist for that in Montreal, Canada. At first, I felt both discouraged and relieved. At least, someone seemed to believe me and did not think I was "Fat" and all the symptoms I had over the years (constant fatigue, bruising, inability to loose the fat on my thighs) were all related to lipedema! Summer of 2011 was tough, had a lot of pain in my legs but this summer, not much at all...

I went to my GP again with all the information I could find on lipedema. She had no idea what I was talking about. Lately, I spoke with a PT who treats women with lymphoedema and she suggested I call a vascular surgeon in Montreal that may be able to "confirm" the diagnosis but she is not sure about that though. My MLD therapist was trained in Germany, he is treating lymphoedema and lipedema patients, he uses the Vodder technique and he told me that if I ever want to have a liposuction, I would have to go to Germany to have it. Because here, the surgeons could do more damage than good to my legs. 

From different support groups on Facebook I have met ladies suffering from lipedema, from USA, Europe, Australia and Africa and I have gained more knowledge about lipedema, what I should avoid eating and so much more. I no longer feel alone and this makes a huge difference for me. I'm exercising and I'm off wheat and follow a low-carb diet. I have my mind set on doing everything I can to not only manage this condition and to do my part in helping others suffering from it and I'm sure that with effort, more knowledge and time, we will be able to find a cure! I will post more about diet and exercises in another blog!

If any of you have a similar story to mine, KNOW that you are not alone!

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Read more by following the links in our Lipedema Awareness Blog Hop

Visiting San Jose Mission in San Antonio, TX

By Christina Routon

Since moving to San Antonio a month ago my life has been a whirlwind! But we've finally gotten the house (mostly) unpacked and settled into our new jobs. It's now time to do some sightseeing.

Mission San Jose is part of the National Park System. It's one of five missions set near San Antonio with the most famous mission being what's known today as the Alamo. We started our mission journey here because the visitor's center for the National Park Service is here and they have a 20 minute video about the indigenous people here and how they came to live at the missions.

Mission San Jose is known as the "Queen of the Missions" and is still an active parish today. In fact, all of the missions except the Alamo are active churches. The local diocese handles maintenance and repair on the church building while the National Park Service cares for the rest of the property.

For many of us with Lipedema, we have mobility issues or problems being on our feet for a long time. This mission is very easy to visit with a flat layout and paved trail around the courtyard in case you use a scooter or wheelchair. There are benches all around the courtyard and plenty of shade under the mesquite trees. There are about three steps going into the church if you want to go inside.

The weather was awesome the day we visited, with a nice breeze blowing through the trees. But sunscreen is definitely recommended in the Texas sun. The wind makes it feel cooler than it really is and I did come home with a bit of sunburn.

We'll be visiting the rest of the missions, including the famous Alamo, within the next month. If you want to see the rest of my photos from Mission San Jose, check out the shared album in DropBox.
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Every now and again we want to focus on the good things in the world. Just because we have Lipedema doesn't mean we need to give up all of our hopes and our dreams. We are a diverse group of women with awesome hobbies, jobs, families, knowledge and skills. I invite anyone who wants to participate to send in a post about how you're Living with Lipedema.

Other Lipedema lifestyle posts: Tatjana - Lipedema in the World

Lipedema conference - Part 2

By Tatjana van der Krabben

Saturday May 17th the Stichting Nederlandse Lipoedeemdag (Dutch Lipedema Day Foundation) had their 4th lipedema conference. This is not a meet, but lectures only. Stichting Nederlandse Lipoedeemdag offers accredited attendence for medical professionals, mostly physical therapists, but patients can attend. It's impossible to cover the entire day, but I will touch upon some of the highlights or otherwise remarkable quotes and finds.

The third lecture was by Wouter Hoelen, MSc, a therapist and one of the researchers involved in a study using ultrasonography for diagnostic purposes. With lipedema often being confused with obesity, this study focused on the question whether you can use ultrasonography to differentiate between obesity and lipedema. A nice touch: almost two years ago, at a Dutch lipedema meet, these researchers were given the opportunity to see test subjects on site. Those attending the meet had the opportunity to participate in the research if they wanted to.

Mr. Hoelen walked us through various slides, showing that you do obtain a remarkably different picture in lipedema compared to obesity. The fascia or connective tissue should reveal a layered image. The fat, as seen on an ultrasonographic scan, normally shows horizontally stacked little layers, marked by white lines. When showing a slide of a scan of lipedema tissue, the layers where fewer and not so neat. The fascia in lipedema shows less structure. The question was being raised whether that's (trapped) fluid. Another question that was raised was if this could explain lipedema pain and tenderness. The other matter being that this layered section of your fat is supposed to be flexible and mobile. This is now being hindered. For this, stretching was recommended.
In his lecture he brought up two more interesting points:

1. Despite lipedema being linked to puberty and beyond, he has observed suspicious characteristics in younger children.
2. They also found that BMI was not in sync with waist circumference in lipedema. Based on the calculated BMI you would expect a bigger waistline. (personal note: HA!)

Joyce Bosman, edema and physical therapist, explained about a new device called the indurometer. It's not on the market yet and she was among the happy few who got to test it for diagnostic purposes.

Lipedema and lymphedema cause changes in the tissue. The lymphedema skin tends to become tougher, the lipedema skin spongier. The indurometer measures to what extend the skin can be compressed to see if the skin has become either tougher or spongier.

Hopes are that the more accurately progression can be measured, the better treatment plans can be drawn up.

She truly stepped on it in this lecture, to allow for a little bit of time for a fellow board member of the foundation NLNet, Barbara Boots, to talk about the Dutch lipedema information film and show its trailer. A nice intermezzo - yes, I'm biased. This is the Trailer of the Dutch Lipedema Film with English subtitles. Note: it will only play on laptop or pc due to music rights that apply.

The fifth lecture was from three physical therapy students. The Dutch Lipedema Day Foundation had provided them with a research project as a graduation project. They set out to research appropriate exercise for lipedema and work towards a directive. It's all theory at this point, but they incorporated working on loss of strength and Graded Activity, to name but a few things.

The best part of it would be that the Dutch Lipedema Day Foundation has turned the tables. They don't only approach researchers to present their research, they also encourage research and point out where research is much needed. That brings me to their latest endeavour. Research is not only time consuming, it's costly. Everybody needs funds, few get it. The Foundation has introduced awareness bracelets and key chains at the conference to help raise funds for lipedema research. There are more lipedema events coming up in the Netherlands next month. So for starters they will be offered there.

The bracelets and key chains are grey and yellow. Grey for the large grey area regarding knowledge about lipedema. Yellow for the light, hope and progress that is being made. Not coincidentally the colors of the foundation. The text reads: Lipedema awareness and support. If you want to know more about the bracelets, please let me know in the comment section and I'll get back on that.

Lipedema conference - part 1

By Tatjana van der Krabben

Saturday May 17th the Stichting Nederlandse Lipoedeemdag (Dutch Lipedema Day Foundation) had their 4th lipedema conference. This is not a meet, but lectures only. Stichting Nederlandse Lipoedeemdag offers accredited attendence for medical professionals, mostly physical therapists, but patients can attend. It's impossible to cover the entire day, but I will touch upon some of the highlights or otherwise remarkable quotes and finds.

Lipedema Directive 2014

The day opened with dr. R.J. Damstra, dermatologist  and president of the Lipedema Directive 2014. The lipedema directive is the first Dutch set of guidelines for lipedema treatment, to be applied nationally. It was approved recently and is yet to be published.

It's multi disciplinary: doctors and therapists are supposed to contribute to treatment. It zooms in on functioning and limitations and encourages to look beyond the accumulated fat and also addresses, for instance, loss of strength, knee problems and foot problems. Liposuction gets a mention in this context, but strictly to enhance mobility when absolutely necessary. As dr. Damstra puts it: it's surgery and damage of the lymphatic system is realistic in surgery. Although he does acknowledge that today’s tumescent method is far, far safer than the old dry method.

It also encourages testing hormones for additional health issues: thyroid, adrenal glands, pancreas and pituitary gland. The patient’s weight is also addressed. Yes, 'weight'. After all, your weight may hinder you. This is not intended as a claim to say you can lose it all, if you only wanted to. This is about getting to be the best you can with this condition. He added the example that the population as a whole is getting bigger, which makes it an issue to each and all, including those with lipedema, to take responsability for their food intake, compared to their level of activity.

Dr. Damstra refers to lipedema as a chronic condition, much like diabetes. Something to learn to live with and monitor. He encourages a pro-active attitude and doesn't support endless sessions with therapists. He differentiates between treatment and maintenance phase, where the patient takes over and applies the tools as taught.

Dr. Damstra brought forward a couple of interesting statements throughout his lecture.

• To him lipedema is not lipedema until physical complaints beyond (some) fat accumulation occurs. So according to him, just having the pear shape doesn’t equal lipedema.
• Lipedema does not stem from a lymph vessel deviation, therefore it's not a lymphatic condition.
• Lipedema rarely occurs in Asia.
• Lipedema has not made ICD-10 recognition yet, because it's difficult to fit their criteria. For starters, naming the cause is required, which is unknown at this point.
• How come the feet are never affected? Feet barely have fat cells.
• Fat acts like a sponge and attracts water. The more fat, the more fluid you carry, but that does not make it (lipo)lymphedema per se.
  
  He also touched upon a few liposuction myths:
• There is no such thing as sucking away ‘all fat’. There will always be (some) fat staying behind, which is as it should be.
• Sucking out only bad or the wrong fat cells is not feasable. That would require screening one fat cell at a time to determine which could stay and which could be sucked.

Now, if I can nag about something: it doesn't say which diet is recommended. This is something they want to leave with the 'experts', dieticians. And we all know what most dieticians come up with: high carb, low fat. Plus, most are oblivious to lipedema. Hence the quotation marks.

I picked up something interesting regarding exercise. Dr. Damstra recommended Graded Activity (GA). GA suggests an exercise program that gradually becomes more demanding. You do the load as agreed with your therapist/coach. So you push yourself on a bad day and don't overdo it on a good day. Personally I haven’t been making progress in ages. I don’t go to the gym on a bad day and hit it hard on a good day, but this leaves me ‘only’ stable. So this is definately something I intend to apply.

Applying LPG

The second lecture was about LPG skin care using the LPG Cellu M6 KM machine. I’m naming the machine, because it was said this one was more powerful/effective than earlier models. It was tested on only 10 ladies, but it was interesting to learn a therapist thought it safe and possibly beneficial to try. 9 out of 10 reported positive effects like less pain and a less heavy sensation in the leg. The tenth lady was the only one at stage 3 and had to give up because treatments were too painful.

It was a small group and only 10 treatments, but I did want to give this a mention, because the question whether you can do this safely comes up a lot on forums. It’s a bit early, perhaps, to take a stand on that question, but it’s good to know it’s on the radar somewhere. She did warn about areas with varicose veins. She said it was best to work around it. Hopefully more tests can be done.

Epsom salt to detox

By Ashley Buckwalter-Mack, one of our new Lipese Challenge members on Facebook

I would like to share with you my experience experimenting with Epsom salt for detoxifying purposes. I was looking for ways to detox my system and I came across Epsom salt. After my first soak I could really tell a difference. There was a ton of dead skin in the bottom of the tub, I was extremely relaxed, my aches were gone and I slept better too! So I thought I would give it another try two days later and this is what happened. I weighed myself before getting in to the tub.  When I was getting out of the tub my body felt extremely heavy so I thought I would weigh myself again, thinking the number would be higher. To my amazement,  the number was down by 5lbs. I stepped off of the scale and back on again three more times to make sure it was reading correctly. Sure enough I was 5lbs lighter! I then turned to the web for answers. I found an article in regards to Dr. OZ stating that Epsom salt can help you lose weight!     

For those of you who do not know the benefits of using Epsom salt, here are just a few: Eases stress and relaxes your body, relieves pain and muscle cramps, helps muscles and nerves function properly, helps prevent hardening of arteries and blood clots, makes insulin more effective, relieves constipation, replaces enzymes, and last but not least, it sucks the toxins right out of you. To experience the numerous health benefits of Epsom salt, take relaxing, stress-relieving Epsom salt baths three times weekly by adding 2 cups Epsom Salt to a warm bath and soaking for at least 20 minutes. For the added benefit of moisturizing your skin, add 1/2 cup olive oil or 10 drops of essential oils. Try to rest for about two hours afterwards.  If you have arthritic joints, move them as much as possible after an Epsom salt bath to prevent congestion in the joints.  Make sure to drink a glass of water before you get in to the tub, and again when you get out, this keeps your body hydrated.

One more thing. Be very careful when getting out of tub as the salts can make you dizzy and your body will feel heavy. Epsom salts can be used for many other things, not just baths. Here is an article that I have found that will explain some other uses as well.

Now, on to my discovery of essential oils! I will just say that essential oils can be extremely beneficiary to your health.  They can be added to your bath water, added topically, or even be ingested. Just make sure to read your label carefully for any warnings or directions before using.  Here is a link to some information regarding the main essential oils and the benefits they can provide.

THE WINTER OF OUR DISCONTENT 2014

by Maggie McCarey

1.  We still have no answers.

2.  We still have no clinical trials.

3.  We still have no specific medical care resulting from research.

I experienced the mother of all cascades this winter with no help or support from the medical community to stop it. No proactive ER team to treat me with dignity and respect as it observed my body in distress. No lipedema specialist to prescribe immediate treatment. Oh, my primary would have happily looked at my legs and then shook her head in bewilderment for $200 plus co-pay but she could not treat me. So, I was as alone again for this potentially life-threatening emergency as I was the first cascade preceding my discovery of lipedema six years ago.  Absolutely nothing has changed in all these years. No medical community advancement. None.

I was on my own from the moment the first purple skin discoloration and twinge of pain covered my back left calf.  The twinge came from a little scratch made by my puppy.  The over-reactive inflammatory response to this scratch came from an immune system on high alert. The perfect storm: a scratch;  auto-immune anemia (the kind people with lupus, rheumatoid arthritis, fibromyalgia and lipedema get); cold weather that brings about chilblains, Raynaulds Disease, and/or cold aggultinin disease (interestingly all caused by the same inflammation-producing vascular irritation of small capillaries in extremities); and my pre-disposition to store toxic chemicals and waste in my adipose cells below the waist. 

A lipedema cascade. Months of frigid temperatures triggered my immune system and, when the cold relentlessly continued,  a horrific cascade filled my lower legs almost to the knee with inflammation.  I could only watch the hot red sludge climb up from my ankles to mid-calf, down to my feet and toes, and then swell my hands. the tissue becoming harder, impacted, more painful, and more resistant to touch every day. Two weeks ago,  my fourth finger on my right hand turned red at the tip and then quickly became blazing hot to my hand.  I went to bed wondering if I would die in my sleep.

 If I had gone to a doctor or to an ER at any one of the moments I have described, I would have been lucky to get a doctor to listen to me long enough to think beyond my fat legs.   And them I would have been prescribed antibiotics that my body would also likely reject.  (Fat legs?  Growing three inches of fat below my knees in days? Fat disorder???? Paleeze.) Every bit of self-knowledge I had about cascade prevention, everything that had worked beautifully for me, small scale, failed. Everything I confidently passed onto you, was swept away this winter of discontent.

I have now stopped the cascade, or rather, re-negotiated with it on an almost daily basis.  Inflammation is at least receding from just below my knees to a hard ban at the top of my calves and half way down to the ankles which are again soft. The feeling of danger is no longer imminent but also gone forever is the feeling that I can make room for lipedema. Let it be in my life on its side of the room. This winter I learned lipedema will never ever be gone; it may be in remission, but given a “perfect storm,”  it will reek havoc on me if I let down my guard.  It could happen before you read this blog.

Ever the scientific mind, I took mental notes, and I did work my way out of the cascade, but not yet the entire effects it had on my legs.  They have drained but not enough.  I added Vitamin B 12 to my regime and folic acid thanks to some serendipitous discussion on Lipese Challenge.  I had already been seriously and for the first time looking at my auto-immune anemia which I have had consistently since 1996. Blood disease, especially leukemia is our family nemesis, and denial for me has been the best part of valor. When folic acid and Vitamin B 12 were discussed a few weeks ago, they connected immediately to the research I have been doing on my low red blood count.  I think B12 and folic acid have helped.

It interested me, too, to see how inflammation layers.  After wearing my canklets for a year (2009), invented in desperation for cascade one, my legs were no longer hard as rocks.  With the inflammation in check, they became soft and fleshy past the hip up into the buttocks.  I hadn't noticed a pattern...how the inflammation had come or left ...and I had never heard of an inflammatory cascade.  This time, I was aware that I was cascading and I observed.  The inflammation began at the top of my right calf and a skin-fold reappeared that had taken two years to diminish.  This was the exact place that I had smacked against an open dresser drawer in my 20's and forever after felt a hard patch t like extra bone.  This time the inflammation moved up from this line towards the knee and also down past the knee into my foot.  Within two days, my left leg was keeping pace with my right leg with amazing inflammatory symmetry.  I was also in a lot of pain which is why I decided not to use my canklets in this emergency. (I haven't worn them consistently for two years as I simply didn't need them).  Finally, I talked myself into trusting the one thing that had changed my legs dramatically the first time.  I put the canklets on first thing in the morning and took them off only when I was in bed for the night.  Doing this reversed the cascade almost immediately.  I hope.

In Steinbach's novel, The Winter of Our Discontent, the hero, Ethan Allen Hawley,  comes close to commiting suicide because he loses himself in his ambition to make a name for himself. No I am not suicidal, but I am depressed to look back and see how little progress we have made, not in making people aware for we have accomplished much in this arena, but in making a name for lipedema among the medical profession.  Looking back only in my own life, I think I would now be  dead if I hadn't been my own health advocate the last 6 years, and I see no change coming in that direction.

I don't know what the median age is of lipedema women sharing support with each other on forums.  I know not many are over the age of 60.  Are we a part of statistics that appears in the mortality rates of the obese, the stomach, ovarian,  and breast cancer folks, the diabetics? At your age, this may not be a concern, but at age 62, having to diagnose myself at age 56, and becoming my own medical practitioner, as well as my daughters', and my granddaughters' primary,  is my concern.  The rage I felt for all of us when I first learned about lipedema kept me inspired.  Now, after this winter and my harrowing dance with lipedema, I am simply, honestly sad for us all.