Sunday, February 6, 2011

Our Story: Infant Son Diagnosed with Primary Lymphedema

By Heather Ferguson

It is sometimes hard for me to believe that not very many years ago I had never even heard of the word lymphedema.  And yet today this disease is a hugely defining factor in my life – partially out of necessity as the caregiver for my son, and partially by choice through my advocacy work to improve insurance coverage for lymphedema treatment.

My son Dylan and his twin brother Devdan were born September 29th, 2006.  Dylan had some minor genital swelling at birth but nothing the doctors or nurses were concerned about.  Over the next two months I continually questioned our pediatrician about the progressing swelling, but it was always dismissed as probably nothing to worry about and something to just keep an eye on.

But by two months of age he had pitting edema in both legs and feet and at our well baby visit our pediatrician’s reaction to Dylan’s swelling was suddenly radically different.  Although we were given no indication of what might be wrong, we were told to go straight to the hospital where Dylan would be admitted for additional testing.

Several hours later a nurse finally divulged that they feared Dylan was suffering from heart failure.  Suddenly I realized why everyone had been so tight lipped.  Although we felt an instant panic and heartbreak, my gut also told me that there was nothing wrong with Dylan’s heart.  Over the next two nights and three days they ran ever test they could think of.  As major organ failure and disease were ruled out we felt relief, but they consistently failed to find any explanation for the swelling.

Finally, having run out of tests to perform they started searching the web.  On our final day, just before discharge, a doctor told us something to the effect of “we found this thing on the internet called lymphedema and maybe it could be that.”  We were offered no explanation of what lymphedema is or how it is treated.  And despite the fact that we do have a doctor who specializes in lymphedema in our city we were not referred to her.  Instead, we were instructed to follow up with a pediatric surgeon who had a month before diagnosed Dylan with bilateral hydroceles. 

Within a few days we were again in that doctor’s office, and he clearly had not done so much as Google the word lymphedema.  This was beyond his scope of expertise and apparently he was not willing to step outside of his comfort zone.  Sadly, his tone conveyed disinterest as he took one quick look at Dylan and told us to just keep watching it and come back in six months. 

At this point I had no confidence we were being given sound medical advice and I started to take matters in to my own hands.  Thanks to the internet I quickly learned that if indeed Dylan had lymphedema the last thing we should be doing was nothing.  I found that we had a local lymphedema specialist and pleaded with the office to not make us wait the months it usually takes to get an appointment there.  

Somehow my sense of urgency reached the doctor who amazingly agreed to see us on New Year’s Day when the office wasn’t even technically open.  Upon examination of Dylan, and discussion of his medical history and test results, she immediately confirmed a diagnosis of primary congenital bilateral lower extremity lymphedema. 

So now we finally knew what Dylan had but we didn’t know why, and the absence of an explanation made the diagnosis that much harder to accept.  Due to an insufficient number of properly trained therapists we would also have to wait a full month after Dylan was officially diagnosed before beginning treatment.  By this point we knew that the sooner treatment is begun the better the results and the less chance of any permanent damage.  And it was heartbreaking to now know the treatment that Dylan needed but have to wait helplessly and see him continue to worsen. 

Although I had a cursory understanding of how his lymphedema would be treated it did nothing to truly prepare me for what it would be like.  The wrapping seemed so crude and archaic.  It seemed hard to believe that this, along with MLD massage was really going to help, and even harder to believe that modern medicine had nothing better to offer my child.  I despised the way the wrapping looked – so massive and bulky on his tiny little body.  A few times I tried to make light of it by joking that he looked like the Michelin Tire Man, but in reality I was choking back tears, usually unsuccessfully, every time I looked at him wrapped. 

And even worse than the daily regime at home I hated all those trips to the clinic to see the therapist.  The facility was clearly not accustomed to serving pediatric patients, or even children, and this only served to heighten my sense of isolation.  Not only did I have the expected feelings of “why my child” but also “why is my child the only one”.  But from day one we were vigilant in adhering to treatment protocols and slowly but consistently Dylan has improved dramatically.  Thankfully, thus far in Dylan’s lifetime he has suffered from only one serious complication; a cellulitis infection which came on with no warning and for no apparent reason, yet resulted in a three week hospital stay earlier this year. 

Now of course, the daily regime is our new normal, but when I think back to how difficult it was in the beginning it still makes me pause.   Fortunately, nothing Dylan needed treatment wise during that first year was ever denied by our insurance company.  But shortly after the kid’s first birthday we were forced to change providers, and the new company staunchly refused to cover Dylan’s compression garments, which he had been wearing since 7 months of age.  After six months of fighting their denials I had exhausted all of my appeals, and even with the help of Bob Weiss I had gotten nowhere with my insurance company.  
But I was not willing to give up and I contacted my State Representative, Tricia Cotham.  Thanks to her intervention the insurance company agreed to have their medical director review the case, and finally, after another three months they guaranteed coverage of Dylan’s treatment for only one year.   I asked how they could make such a decision for a life-long disease with no known cure I was given no answer.   I also asked if they were going to extend this one year of treatment coverage to their other policy holders with the same disease needing the same treatment, and was told no. 

Because of my interaction with Bob and the National Lymphedema Network I understood that this was not an isolated incident.  Lymphedema sufferers all over the country were being routinely denied coverage for care, and this only strengthened my resolve. 

At this point I knew, that if I did not correct the underlying problems I, and later Dylan, would be forever struggling to get the medical treatment that he needs and deserves.  So I made it my motto that while I could not cure Dylan I would do everything in my power to make this disease easier for him to live with – I would fight this battle now so that he would never have to.

I knew from the start that nationwide coverage was my end goal, but heeding the wise advice of Bob Weiss I took on getting a state mandate first.  In hind sight it was a great blessing that Representative Cotham witnessed first-hand that this problem could not be solved on a case by case basis.  I am certain that she is now even more sympathetic to the plight of lymphedema sufferers being denied coverage having experienced the frustration right along with me.  Representative Cotham advised me she felt we had a decent chance of obtaining a North Carolina state mandate, but to anticipate the process could take up to six years.  The fact that we passed ours so quickly is truly a testament to how hard she and I worked. 

We agreed at the outset that we should introduce a bill that had the greatest chance of success while helping the majority of lymphedema sufferers in the way they needed it most.  We were mindful that we likely could not solve every problem in one sweep, and Representative Cotham assured me it would be better to get what we could on the books now and revisit the issue several years later by introducing more legislation if we felt there were serious deficiencies in the mandate which could be improved.  And the result - in only four months time we introduced and passed a lymphedema treatment mandate which went in to effect January 1, 2010!

That made North Carolina the second state in the nation to require private insurance policies to cover lymphedema treatment, with the first being Virginia who has had a similar mandate in effect since 2004.  But the problems surrounding lymphedema treatment coverage cannot be fixed through state mandates alone, which are only applicable to private insurance policies and state plans and do not afford coverage to Medicare recipients.  Nor should we have to spend decades working state by state when this is a nationwide problem that needs and deserves a nationwide fix.
So after obtaining our North Carolina state mandate I forged ahead and began contacting my Congressman’s office.  It took several months of persistent phone calls and emails before they granted me an in-person meeting with Congressman Kissell himself, but within weeks of meeting with me I got a phone call that he had decided to sponsor what is now The Lymphedema Treatment Act.  That bill was introduced in late February of 2010 and I have been working tirelessly since that time to build support and momentum for this legislation. 

But we need your help to succeed. To learn more about the bill and how you can support its passage visit Please feel free to contact me at any time if you have questions or would like more information.  Together we can ensure that my child, and the millions of Americans who suffer from lymphedema are no longer denied the treatment coverage they need and deserve!   

Heather Ferguson

Thursday, February 3, 2011

Vicki Borken featured on TLC's "My Shocking Story: My Big Foot"

Vicki has Primary (genetic) Lymphedema Type I : Milroy's Disease and was featured in the TLC documentary "My Shocking Story: My Big Foot"

You can see more of this video at

Wednesday, February 2, 2011

Lymphedema Types & Treatment

Lymphedema: Dr. Guy Photopulos, a surgical oncologist, reviews lymphedema, which is essentially severe leg swelling. Some patients have primary lymphedema, meaning it is not from another cause. But most cases are secondary to another problem, such as trauma, surgery, cancer. In addition to pain in the legs, and difficulty with ambulation, skin problems, such as skin infections are the major complications from lymphedema.

Tuesday, February 1, 2011

Tamie's Story: 15 years to Diagnose Correctly

The first time my left foot swelled I was just 13 years of age. My parents wondered if I had been bitten by a bug or something. With elevation, the swelling went away. It came back with a vengeance two years later.

I saw a family doctor who sent me to have an x-ray in which contrast dye was ran through the leg to check for a blood clot. There was none. The doctor began to suspect I might have a condition called Reflex Sympathetic Dystrophy. She wanted to have more tests run, but my family could not afford them at the time.

A few years later, when I had health insurance, I saw another family doctor about my condition. My foot and leg were horribly swollen below the knee, and it had gotten so bad that I could barely remove my shoe at the end of the work day. The doctor told me that it was normal swelling and could be alleviated by elevation. He also recommended that I take a sit-down job so as not to aggravate the swelling any farther. This advice wasn’t much help. I was quickly becoming frustrated because I felt as if I weren’t being taken seriously by my doctor.

I saw yet another family doctor a few years later (1996) who also did not know what condition I had. In 1999 I was finally referred to a specialist because of some neurological symptoms I was having, not in the foot, but in my hands which also are prone to swelling. The doctor had some tests run to rule out conditions like Lupus, Multiple Sclerosis and Rheumatoid Arthritis. He was leaning towards a diagnosis of Rheumatoid Arthritis, but because I lost my insurance that year I could not have the testing that was needed.

Once I had insurance a few years later, and after a bout with pain in my hands and inflammation, I saw a new family doctor, wanting a referral back to the doctor who thought I might have Rheumatoid Arthritis. I was put on a drug called Salsalate a.k.a. Salaflex which is an NSAID and surprisingly took much of the swelling in my left foot and leg away. X-Rays of my feet and hands did not show Rheumatoid Arthritis, but I was given a referral to a rheumatologist anyway.

In November of 2001 I was seen by the rheumatologist to be sure I didn’t have a case of Rheumatoid Arthritis. This doctor suspected a case of Fibromyalgia instead. He did some sort of test, pushing different spots up and down my spine and said because I had certain sensitivities, that I had Fibromyalgia and that it had caused my foot and lower left leg to swell this way. Now, I knew someone with Fibromyalgia and I knew she complained of widespread musculoskeletal pain all over her body. I didn’t suffer pain all over my body. I refused the diagnosis and the treatment of some pill to help me enter stage four sleep. I thought that doctor was a quack. I was very angry that he insisted that my lower left leg was swollen due to fibromyalgia.

Having great difficulty finding shoes that fit I became more and more frustrated over the years. The doctors I saw didn’t seem to really know what caused my lower left leg to swell the way it did. I found it embarrassing to have this grotesque deformity. I couldn’t wear any shoe that didn’t come with a Velcro strap, or wasn’t cut like a Mary Jane. Really, all the shoes I found weren’t wide enough for my fat foot to fit into.

Now this may seem a little bit strange to you, if you aren’t a person of faith like I am, but in late 2003 I was watching a Christian show called The 700 Club and the hosts Terry Meeuwsen and Gordon Robertson were praying over viewing audience members, calling out conditions that the Lord was healing. I watched with great interest and prayed, “Lord, if you won’t heal this condition with my foot, then please at least let me know what it is.”

About three weeks later I received a phone call from my mother in Texas. She said, “Tamie I told my doctor about your leg and he said he knows what it is wrong with it. He said it is something called lymphedema.”

I looked up the condition on the internet, and much to my surprise, I began to find pictures of people with mismatched legs, one grossly swollen and the other normal like I had. My mother’s phone call was an answer to prayer, or so it seemed.

I found the National Lymphedema Network Website, and an article on it which talked about how doctors often overlooked the diagnosis of lymphedema. They had a letter to print out and take to the doctor with a list of things to look for in diagnosing lymphedema. I was so excited! I took the papers to my doctor. He laughed at me for thinking I had this condition! I would say his name, but I don’t want to get sued so I’ll be nice. He told me about the type of swelling that lymphedema patients have. He told me that because my swelling “pitted” I could not possibly have lymphedema. We got into an argument. I grew frustrated. I needed his referral so my insurance would pay for a visit to the Lymphedema Specialist in South Bend, Indiana. He refused to give it to me. What he said was, “ I am going to prove to you that you do not have this condition. I am going to send you for an MRI.” So the MRI came back showing that I had soft tissue swelling, which he said meant I did not have lymphedema.

I saw the Lymphedema Specialist anyway and had to pay for it because I did not have a referral from my ignorant family doctor. I told the specialist about my history, about how the symptoms came on when I was 13-15 years of age with no known cause. I told him about the doctors I’d seen over the years and various tests I had run. He examined my leg and had it measured in different areas just as the first doctor I saw back in 1989 had done. He said the story I told him was an all too familiar one, and so were my symptoms. My diagnosis was Primary Lymphedema Type II: Meige’s Disease. This is the kind of genetic lymphedema that comes on around the time of puberty, or after. It is usually seen in one leg, below the knee, and in girls. It is caused by having underdeveloped lymphatic vessels.

The Lymphedema Specialist had me measured for a 40mm compression stocking. He recommended Manual Lymph Drainage as treatment. I soon learned my insurance company would not cover it so I never got it. The doctor assessed my lymphedema as grade II-III, with the fibrosis (hardening of tissue) taking place in the lower portion of my foot, especially the toes.

I continued to take Salsalate for several years after the diagnosis, but it eventually stopped working. I think it is because so much tissue has hardened now, and the swelling is just building on top of it. It is irreversible. Of course, it doesn’t go down very easily with elevation. I wear a lighter compression stocking because the ones they prescribed I could not get on easily, and when they did, there was so much slack in them that it pinched parts of my leg. Do they make them for short people? I asked one manufacturer that question. The answer was no.

As for shoes, I’ve learned over the years that it is pointless to walk around the mall, as my foot increases from the walking, going from store to store trying to find a shoe that will go on my “fat foot.” I once went to a special shoe store that has now closed. They carried extra wide shoes and I found this lovely pair of black mary jane’s by Propet. So I purchased a size 7 4E (that’s 4 extra wide). I had to have the velcro strap lengthened about 4 inches on the left shoe and shortened on the right. I love my shoes, snd I’m in love with the brand Propet. I have bought a couple other pairs of shoes by Propet through . They offer free shipping to you, and free return shipping if the shoe doesn’t fit. I can usually tell by looking at a shoe if I can even try it on or not. Anything that has fabric above the lower part of my foot (not cut like a mary jane) usually won’t go on, unless it is a lace up type shoe.

I would like to add one more thing before I close this story…

Thanks to the ignorance of the medical community it took me 15 years, 9 doctors and two specialists before I got a correct diagnosis. That diagnosis came after prayer, and a heated argument between my ex-family doctor and myself. Through the years, though I’ve obviously had something wrong with my foot, time and time again I felt like I was being treated like a hypochondriac (someone who pretends to be sick to get attention) by doctors who belittled me by not taking this disease seriously. I feel the vast majority of the medical community is uneducated about lymphedema and how to properly recognize it.

On my website,, I now share my story and the stories of others to raise awareness in hopes that one day this condition will be easily diagnosed and treated by the medical community. The risk for not treating lymphedema is that the swelling, if not kept in check, hardens and becomes prone to infections like cellulites and even gangrene.

 I thank my God for leading me to the correct diagnosis.