Tuesday, October 14, 2014

Immobility in Lipedema

by Maggie McCarey

    When lipedema support first began via forums, one common topic was the immobility that often accompanies lipedema in later years. The forum thread invariably evolved from a conversation that began: I am going to do everything I can to keep myself out of a wheel chair. Over the years, immobility has become less and less  common to forum discussions, even though reduced mobility and even immobility are possible outcomes of lipedema. Do we talk less about the wheel chair because we fear it, or because, as younger women join our ranks, the emphasis is more often about cosmetic solutions?
Frankly,  that an undiagnosed disease causing women to become wheelchair bound exists, is still flabbergasting to me. Yet, it is true and fearsome and raw. In the years I have been in the lipese community forums, immobility has been pushed further and further away from our awareness. Perhaps, it is time to ring the alarm again.  Lipedema sometimes causes immobility!

   I have sought at various times to compose a chronicle of events leading to my immobility. Because this inordinately slow progress is unnamed and unknown, our personal aha moments are seemingly random rather than progressive, making the timeline difficult to recreate so please bear with me.  
My Immobility Timeline
1951: I am born in a hospital bed with no one in attendance to steady my head and hold my neck against injury.  Why is this important?  Many spinal birth defects are caused by an unattended birth.

1953: I whiz down a slide so fast I go airborne and hit the slide’s edge at the bottom.  I am diagnosed with a compressed lumbar region which takes weeks to heal. 

1956:  Though I am hyperactive physically, I can do no gymnastic moves without injury and throughout all of my schooling K-12 l am exempt from gymnastic moves in P. E. 
1956-60. I unconsciously learn to adjust my upper body to compensate for the lack of flexibility in my lower body.  I fall often.  My legs ache at night.  I am never without pain.
1961: I am diagnosed with Perth’s disease. (Its symptoms:  The child may show signs of limping and may complain of mild pain. The child may have had these symptoms intermittently over a period of weeks or even months. Pain sometimes is caused by muscle spasms that may result from irritation around the hip. Pain may be felt in other parts of the leg, such as the groin, thigh, or knee. When the hip is moved, the pain worsens. Rest often relieves the pain. http://orthoinfo.aaos.org/topic.cfm?topic=a00070).  I can bear no weight for 6 weeks.  
1966:  I discover tennis.  I play daily and win all intramural tournaments but fall easily against my ankles because my body cannot twist.  My first conscious adaptation occurs when I jump high to meet the ball and then depend on my feet to land my jump after I twist my body midair   back to center.
1970’s:  I cannot easily carry my children up and down stairs or for more than a block. I am never again able to carry weight on my back, i.e. backpacks, children in baby carriers, etc.
1980’s and 90’s: I work out incessantly, leaving a fitness center to come home and do my nightly exercise protocol, including resting my body on one knee and bringing the other leg straight out to the side, then swinging it as far forward and back as my hip allows, 50 times each leg. I do this for the next 30 years.
1981: I can no longer wear heels of any kind by age 30 without causing weakness in my back..
1985:  Even though I am thin, wearing a waist band in pants and skirts causes my lumbar region pain.  I first become aware of the weight of clothes when I put them on.

1987: My hips become inflamed and stay that way for 6 weeks without explanation.
1990-2: In Nome, Alaska, I experience almost zero humidity.  I have little to no pain but when I leave Alaska for the last time, my daughter asks me to jump rope with her in Anchorage,  and my body refuses. I realize then my “structural distress” has progressed and that I may have a disease.
1994:  Homesteading, carrying bags of grain, planting trees and in good health, I begin to notice that I cannot get out of my favorite old rocker easily, and I often used upper body weight to push myself up out of every chair. 

1996:  I buy a treadmill but when I use it my knees give out. So, I create a walking trail in my sanctuary but after awhile, my right foot doesn’t lift as high as my left, and it catches on carpet while I walk.  I discover uneven terrain, and I miraculously begin to hike many miles a day.  I stay in great shape, walking and climbing mountains daily.  However, I can only walk  this distance with loud music playing in my ears.
2000:  I walk at least 3 miles everyday.  I am in great physical shape.  I cannot get up from a sitting position on the floor.  I cannot walk up a stairs without holding onto a railing.  I cannot run downstairs sideways.  I  can swing into the cab of my husband’s truck, but every move is played out  in my head before I execute it.
2001:  I walk up and down stairs and along trails by dragging my right foot and swinging it outward almost without detection.  One day my husband says, “Do you know when you walk up a stairs you bring your right foot from behind and then swing it forward?” I didn’t know until then.  
2002:  I cannot get in and out of church pews or movie seats.  I avoid couches and soft chairs.  I begin to spec out steps and their height when going to an unfamiliar place.  I avoid going to the hospital to visit my congregants unless I have to because the walk on concrete creates lipedema pain, which has become more identifiable and less manageable every passing day.  I find ways to fall back onto small toilets and to pull myself up from nearby sinks. I still walk many miles a week but I can no longer lift myself out of a bathtub from a sitting position.
2003:  I have a huge stress-related event which precipitates a total structural collapse.  I don’t walk for months.  I shuffle.  I don’t remember now how I manage to keep working. I walk with the sensation of wearing sweat pants filled with sand and walking in water, no pain. Gradually, I walk again.  I don’t know how or when I started walking again as I just push my body along anyway I can until it remembers. I am in peri-menopause.  Every month or so, my lower back goes out for two days before my period and I can barely use my right leg until the moment my period begins.
2004-2008:  Remission but no longer walking more than a few blocks at a time.  I work two jobs, both requiring major mobility and I manage, now in constant burning leg pain, which goes away when I sleep. I awake pain free until I walk.  I can no longer get in and out of compact cars.  I move to a new church with an elevator.  They put in a new handicap accessible bathroom downstairs in the parsonage because I cannot go upstairs, even one leg up sideways, my last stair adaptation.  I go to Guatemala with feet and legs hugely swollen—a trust journey.  I am so swollen, I need an extension to buckle my seat belt on the plane.  I return a week later, twenty-five pounds lighter, and I am able to stand for an hour without pain.  I feel restored as if I had never had a problem walking.  I determine to walk up and down a steep hill outside my house.  Within 3 days, I am back to my pre-Guatemalan state.  I cannot walk and my body swells.  The pain in my legs at night is again unbearable.

2009: This is the first year in a long while that I am very overweight.  I get less and less medical care because my immobility can be blamed on my weight.  I complain about my back and I ask my doctor for an MRI.  She calls me with the news that for my age my back is remarkably preserved. Amazing in fact. Two more specialists see me and say I am food non-compliant.  I get so bad, I walk with a walker.  I do weddings and funerals sitting on the seat of a walker.  No doctor monitors my increasing immobility. I have to lose weight if I want their help.  I recognize women who walk exactly as I do.
2011:  I am on permanent disability.  My knees are bone on bone, and if I have knee surgery, my specialist says the risk is so high for amputation, he will not touch them.  My weight is once again under control, manageable, stable.  I lose 4o pounds with no change in my walking.  I trade the walker in for two Canadian canes and I am somewhat mobile again.
2014.  Not much change except that my remarkably preserved back continues to seize on me when I stand for any length of time. My habitat becomes smaller and smaller. I seldom go to a show now.  I shop once in awhile, and I still keep my house presentable between my housekeepers’ weekly visits.  Because I am no longer flexible, falling comes easier. I am no closer to a wheel chair then I was in 2009, except those random times when a knee gives out or I injury my leg in some way.  On these occasions, I remember things I have lost, never to be found. I remember the chancy evil eye who teaches me about the fragility of life. I remember to fear the worst.

Then I dream I will walk again.  And so it goes.

Monday, September 22, 2014

Lipedema and eating disorders

By Tatjana van der Krabben
We sometimes read or hear about lipedema and eating disorders. Over time I encountered several ladies who had an eating disorder in the past. We know it’s there, but for me personally it was more like background information. A little surreal.
Today, on Twitter and on a forum I heard about a woman with lipedema who had developed anorexia. She lost the battle. Today it became more real than ever. Too real…

We all know what lipedema does. It takes nothing (much) to gain, but it takes blood, sweat and tears to lose weight. And you don’t get to lose it where you want it gone or to the point you want to lose it. At the same time many of us get encouraged to exercise more and eat less. Even by medical professionals and even if that is not realistic or what is truly needed. This is a red flag, people. A big one.
I got tempted to speak of support groups in this blog, but the truth is that eating disorders are a league of their own and very complex. Which leaves raising awareness, so people at least have a chance to learn about this piece of their health puzzle early. It’s good to see more and more lipedema patients are stepping forward and sharing their experiences.

Here’s to hope.

Monday, September 8, 2014

Is lipedema hereditary?

By Tatjana van der Krabben

Is lipedema hereditary? Interesting question. For starters, that is not proven. Yet? Another interesting question. If you ask me to speculate I wouldn’t go with hereditary full stop. And here is why.

Despite it often being quoted, lipedema is not a proven hereditary or genetic condition. Read the fine print; papers mostly say something like ‘possibly hereditary’ or ‘in part’. With family members displaying symptoms, one generation after another, going against the hypothesis of it being hereditary seems rather futile. Also, I can hear you gritting your teeth from here: “Is she implying I brought this on myself?!” Rest assured, I’m doing no such thing. But here’s some food for thought.

Regarding lipedema there are many assumptions going around. About percentages and numbers of women having it. Mostly 1 in 10 or 1 in 11 is mentioned to state the urgency of the matter. Sometimes in relation to a country or continent or even the world. Again, not proven. Worse, that’s just one estimate. Child et al (2009) came up with a minimum estimate of prevalence of 1 in 72.000. Those estimates are worlds apart. In a recent lecture dr. Damstra, a Dutch specialist, mentioned its occurrence in Asia is genuinely rare. So 1 in 10 in the world can’t be right. 1 in 72.000 sounds way to conservative to me; on an average summer day on a beach or in a theme park I encounter several ladies with lipedema. My point? Keep an open mind!

Am I playing it down? No. I believe the matter is actually getting more urgent. This is why. I’m coming from observation and am just hypothesizing, but the generation before me usually didn’t experience serious issues until menopause or a hysterectomy, often despite multiple pregnancies. As in, of course in retrospect there were some signs before, but their functioning was hindered only so much until then. My generation mblmmmb (read: forty-ish) experienced undeniable symptoms when pregnant. I now see girls still in their teens with stage 3. I also hear of more and more men getting diagnosed.

My generation did without junk food to mention of until our twenties. Soda bottles were made of glass until I was fifteen-ish and snacks and treats were limited to weekends and parties. I feel like we are the transitional generation in this picture. Of course in part this is the same debate as with autism and ADD etc.; is it getting more common or are more people seeking and getting help/diagnosis? No doubt more people seeking medical help has something to do with it. Something, but not all. I honestly see lipedema getting worse faster and faster.

Fact: the population as a whole is getting bigger. Fact: we get less exercise then we did in my grandmother’s day. Fact: our diet has changed tremendously from seasonally limited options and whole foods to mostly processed supermarket ‘food’. And here’s the thing we all know: let the average girl switch to granny’s whole foods and some exercise and her fat will melt away and with us not so much. Well, definitely not all of it. Also, we tend to gain faster eating the same type of food in the same portions. So, I’m leaning towards part circumstance and part predisposition. That would also explain how some manage to get virtually symptom-free by changing their lifestyle. If it’s genetics only, that would be rather strange, to say the least.

I’m not pulling a rabbit out of a hat here. Several researchers are hypothesizing along the same lines. This theory is telling me two things:

1. We run the risk of having an explosion of lipedema with young teens taking birth control already, supermarkets being the main food source for most which offers little whole foods and the increased digestion of xeno and phyto estrogens.
2. There’s a point to looking at circumstance and lifestyle. Change for the better what you can. Reduce inflammation, keep moving. Many are already travelling down that road with (some) success.

So, no, you are not to blame for developing lipedema. We all get caught by surprise, but please stay pro-active. It’s about quality of life. We all want it to be the best it can be. Right?

Monday, July 28, 2014

What to consider when searching for a surgeon to perform liposuction

This blog could never cover everything relevant, but it's a start, coming from personal experience and what else I learned along the way. I do not recommend liposuction. This blog does not provide tools to assess whether you should have liposuction. However, I receive many questions on where to start when considering liposuction and in that context I offer this information as food for thought. Preferrably, in an ideal world, you would be going over these issues with your informed doctor, or better yet with a specialist in a multidisciplinary institute, where they could answer all your questions and offer the treatment when considered a good candidate.

Learn what exactly you are looking for.
Liposuction, liposculpture, WAL, PAL, tumescent: are you still with me? It's ALL liposuction. All of it. And it's all tumescent. I love this quote of dr. P. Aldea:
"Tumescent liposuction is nothing but the universally performed pre-liposuction infiltration of the fat to be suctioned with a dilute solution of a local anesthetic (lidocain, marcain etc.) and adrenaline (epinephrine) which increases the accuracy of fat removal, largely reduced blood losses AND increases patient comfort."
Source: http://www.realself.com/question/tumesecent-liposuction-general-local-anesthesia

As dr. Aldea puts it: the anesthesia is supplemented. Meaning: tumescent infiltration of the area to be suctioned is a given, but the type of anesthesia is a matter of choice. But mostly not the patient's choice. I'll get back on that.

PAL, WAL, UAL, LA etc.
Along with tumescent, there often are additional specifications regarding the technique a surgeon applies. They can use a specific suction device like Power Assisted (PAL) or apply a thin water beam to help losen the fat from the tissue: Water Assisted Liposuction (WAL). There are more flavors out there. I highlighted PAL and WAL, because lately these are frequently mentioned on patient forums. However, as you can read through the link, these are not the only options.

As you can read they all are presumed to have their merits and do something specific to spare the lymph, do minimal damage, minimize risk etc. Ask a surgeon which is best and you'll get an answer. Ask another surgeon and you'll get another answer.

As a layman I noticed the difference of opinion between professionals and let it be. A certain surgeon prefers a certain technique. Well, apparently that technique suits him/her best. My personal choice was to get over the various terms which I could only ever understand superficially and looked at the surgeon's track record instead: knowledge of lipedema and years of experience. After all: the tool doesn't define the result; it's the surgeon's skill in using the tool.

Note: there's more research out there now compared to the time I had my procedures. If you want to know more about a particular technique and how it works compared to an other or the "plain" technique, there's far more information to be found. Go straight for the "boring" stuff: formal publications, in order to avoid information designed as a scientific-looking piece of marketing. The quickest way to cut to the chase is to search through Google Scholar. It only contains scientific publications.

Plastic surgeon or cosmetic surgeon
A plastic surgeon is trained in hospitals by professionals and has completed related residencies. Cosmetic surgery is not taught through residency programs. Doctors seeking to learn cosmetic surgery typically get their training after their residencies. This pretty much means a doctor would need to organize his/her own training and has a certain freedom the raise the bar to his/her liking. Cosmetic surgery is practised by doctors from a variety of medical fields. Read more about the differences here.

However, deciding between a plastic surgeon or a cosmetic surgeon based on the title only is a trick question. Plastic surgery does NOT equal (knowledge of) liposuction. There are numerous specialties within plastic surgery. Plastic surgery is first and foremost focused on reconstruction of defects due to disorders you are born with, trauma, burns and disease. Lipedema qualifies as a 'disease'. Care to guess how many hospitals acknowledge the condition and offer liposuction as a treatment option? Few. Very few. As a consequence there are few well-trained and informed plastic surgeons out there. For reference: tumescent, which is raved about as a major improvement to liposuction surgery, is invented by an American dermatologist, dr. Klein.

When considering a surgeon you best look at expertise and experience. While you're at it, also look at client/patient reviews. In that context, beware of posers, pretending to be content patients. In the past some clinics have used this despicable method to lure clients. It may still occur...

To improve cosmetically or to improve mobility and reduce pain
This is not about starting a debate. Your body, your choice. It's just very important to find out where your priority is and whether that priority matches with the surgeon you're considering for the job. It's not either/or per se. It can be a little of both. But trust me: there are surgeons out there with a 100% focus on mobility and they will NOT be open to a post-op debate over looks. Even when the result is very uneven and/or irregular. There's also the patient who, in her heart, wants killer legs (back). Again, not judging. Just make sure you set out for a realistic goal with a surgeon who is able and willing to help you strive for that goal. Strive, yes. We're quite the canvas to work with. It's no exact science.

You want a good or even super cosmetic result?
Ask. Ask for pre-op and post-op pictures of women much like you: size, build, with lipedema. Don't let the surgeon just show you his/her best work ever on young ladies with little excess fat and lovely elastic skin. There's skin elasticity and the condition of your connective tissue to consider. Ask about your personal possibilities and impossibilities and, if needed, try to adjust your expectations. It's better to know before than after when there's no going back.

Look for a surgeon with knowledge of lipedema
Typically, those seeking liposuction for purely cosmetic reasons need to have little fat removed. It's not designed as weight loss surgery. Many surgeons even refuse to operate when the BMI is on the high end. Many of these surgeons commonly remove 1 liter, maybe 2 per surgery. A drop in the bucket for most of us. We need someone who can and will remove more.

He/she would have to be aware of the fact that we need to be especially careful with our sluggish and sometimes already compromised lymphatic system. As well as: possible poor skin elasticity, weak connective tissue and possibly slower healing.

General anesthesia or local
General anesthesia in itself poses a (small) risk, on top of the risks inherent to liposuction. You can draw the line there or you can reason that didn't stop you in the past to, say, have your appendix removed.

General anesthesia burdens your body. When I insisted on general anesthesia myself in an entirely different procedure, my surgeon warned me it would take me more time to recuperate afterwards compared to undergoing the same procedure with an epidural. It simply adds to what your body needs to process when healing. Local anesthesia is also favored by some to have the patient able to move and, if need be, stand to assess the evenness of the result. On the other hand, the prospect of enduring the procedure wide awake can be stressfull. Maybe too stressfull for some.

If you are to opt for general anesthesia, you may need to look a little harder for a suitable surgeon. Many clinics can't or won't offer general anesthesia. It requires additional facilities, knowledge and assistance during the procedure. If not that, some surgeons truly want you awake to monitor your wellbeing themselves and have you participating by moving during the procedure.

Pre-op and post-op care
What is being checked and looked into to dertermine you are a suitable candidate? Is it thorough? Do you have a good feeling about this? Do you know the basics and were provided with information on how to prepare for the procedure, what to expect and how to arrange care post-op? How can you reach the clinic when you (feel) you need to? What if post-op complications arise? Who covers these expenses? Where can you turn to? This is particularly relevant if your surgeon is far from your home and you travel back soon after the procedure. At the same time: don't wait to be asked about specifics. Share your medical history and use of medication in detail.

Do inform your primary, even if he/she doesn't support the idea. Make sure they understand what you embark on so they can help in case of problems.
Obvious stuff? Sadly no. I still read about questions like: "Is it normal to still have swelling after a week" and "Is it normal the cuts ooze". That's basic stuff. You should be told about this sort of thing in advance.

In rare cases the procedure is covered. Ask around on forum if someone from your country managed to get it covered and what they did. Even if the odds are slim, consider trying. Health Insurance companies need to become aware of lipedema and liposuction as a serious treatment option.

Also, think how far you want to take this. Going ahead with the surgery while still butting heads with your health insurance may ruin your chances of coverage. It may also lead to a road where you can't have the procedure done by your surgeon of your choice. Ask around. Patient forums on for instance Facebook are a wonderful source of practical information.

Wednesday, July 2, 2014

Living With Lipedema - Visiting Downtown San Antonio

A few weeks ago we took my mom's advice and decided to visit downtown San Antonio on a Sunday. We actually took Sunday and Monday in order to take advantage of the hop on / hop off tour from downtown. I was hoping we could catch the trolley at one of the missions near us, but after calling the company to confirm this idea it was out - we had to brave our way downtown.

I do recommend going on a Sunday. The traffic wasn't too bad and we were able to find parking.

We bought hop on / hop off tickets for the Alamo trolley on Sunday and got our second day passes for Monday. It was late afternoon so for this first trip around we just road the trolley for the one-hour tour and decided where we wanted to go the next day. 

The trolleys were all handicapped accessible, and that's important for those of us with more advanced lipedema. If you're traveling in a wheelchair or scooter, all the trolleys had wheelchair lifts. Some people got on the trolley then sat in a regular seat after boarding. Others sat in the back of the trolley in their chair. 

 We toured the Alamo that evening then came back for the downtown trek on Monday.

Our first stop was the King William neighborhood. We had an hour in this historic neighborhood. We walked past several historic homes and passed a few that were open to the public and made some plans to return on another day to tour the homes and grounds. We also walked along a portion of the RiverWalk, an 18 mile stretch of bike and walking paths that lead from downtown San Antonio along the river towards the missions outside of town.

The Riverwalk is very wide, accepting wheelchairs and powerchairs easily. However, not all access points to the walkway offers ramps for easy ingress / egress. There are maps of the Riverwalk so you can see what areas have handicapped ramp access available. 

We also visited Mercado, an indoor mall with several interesting Mexican imports. We're planning to go back for Christmas gifts. Then we hit the Main Plaza where we walked along the riverwalk some more.

One of the highlights was our boat tour along the river. As Bexar County residents, we even got a discount on our ticket. The sun was setting and the day was cooling off - the perfect time to be on the water. We saw several places we're looking forward to visiting on another trip and we learned a lot about the downtown area and the river. And I'm thankful that the tour guide mentioned getting to Hemisphere Park via the Riverwalk - a quick 5 minute walk and we were there instead of a 20 minute walk on the busy streets above.

The website for San Antonio Cruises says all boats are ADA accessible. Be aware that the boats can be pretty crowded. As you can imagine, they want to fill every seat. There are handrails for stepping in and out of the boats and the steps weren't too steep. 

We ended our day of sightseeing walking through Hemisphere Park, the site of the 1968 World's Fair. We walked over to the Tower of the Americas but didn't go up. It's on our list for next time. I did make reservations for a birthday lunch at the Chart House restaurant, a revolving restaurant at the top of the Tower.

Some tips for traveling downtown:

Parking - know where you want to park. All lots have a fee, but the ones run by the city are less than a private lot. If there is an event going on the parking may be more than listed. I started with the BestParking.com website and found a lot near the downtown area where we needed to be. It was a city lot and cost $2.50. We'd originally paid $10 to park on Sunday, so knowing about these other lots was definitely worth it. The website gives the address of the lot and I found it easily using Google Navigator on my phone. If you're staying in a hotel, walk downtown if you can or see if your hotel offers a shuttle into the area. If you need handicapped accessibility, be aware that some of the cheaper lots may be several blocks from downtown. 

Wear good shoes.

Restrooms can be difficult to find. On Sunday there were portable toilets set up but they were gone on Monday. If you're a paying customer, you're welcome to use the restrooms in the businesses downtown, but many have signs stating that there are no public restrooms. 

Check out the rest of the pictures from our Alamo / San Antonio trip in the album on DropBox.

Thursday, June 26, 2014

Lipedema is NOT obesity

By Tatjana van der Krabben

Lipedema is not obesity. It's like comparing apples and oranges. We say apple - or rather pear - to our doctor, he/she replies orange. We've been going around in circles for some time. Some anomalies in our fat cells have already been reported, like hyperplasia of individual fat cells. The fat distribution in lipedema is also very distinct. Yet, we lose our primary at the word 'fat'. There wasn't much else to prove it's apples and oranges, not just oranges. The fact that our blood sugar, blood pressure and cholesterol is mostly normal? Dumb luck and ticking time bomb. Those who did have elevated values? Aha, they proved our doctors' point.

Times are changing. Research is changing. Recently I attended two lectures on studies that specifically compared lipedema and obesity and they found clear differences.

Smeenge, Damstra and Hendrickx found that patients with lipedema have muscle weakness. We have 30% less muscle strength compared to what is considered 'normal'. The obese control group didn't share this muscle weakness. This is unpublished at this point, but you can find a summary in English here.

Hoelen, Van Zanten and Bosman looked at the value of ultrasound as a diagnostic tool in lipedema. Again, in the control group obese women were included. I've seen the slides at the lecture in May. It doesn't take a medical background to spot the differences between the scans that were showed of a person with lipedema and of a person who is obese. Also, it was found that the BMI of lipedema patients doesn't match the circumference of their waist; it was smaller than you would expect based on the BMI number. Meaning: BMI doesn't add up for lipedema.* Again unpublished at this point, but you can find some information on this research in English here.

Lipedema is NOT obesity and some proof of that is finally coming our way. Why is that such a big deal? If you are on team obesity, you are, but if you're not, they should be looking at the issues you DO have, not what they assume they would be. They can't help us or think with us, if they don't see us for who we are.

In all fairness, I've seen studies in the past pointing at lipedema-specific pathology, but these studies are all but forgotten. Fingers crossed these studies get the attention they deserve and stick.

*Get in line, because BMI doesn't add up for a lot of different groups of the population. Also see my blog on BMI.

Thursday, June 19, 2014

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.