Patient Stories - Primary Lymphedema
Would you like to share your story? Please contact Angela Connell-Furi at (306) 477-1266
Read My Story
My first signs of Lymphedema started showing up when I was very young. Around age 5, my parents noticed my left foot had not lost all of its “baby weight”, so we went to my family doctor, who said that it was baby weight, and it was just taking a little longer but not to worry. This was in the early 1990’s, and Lymphedema was very unheard of. After another 2 years or so, we decided to try and figure out what was going on. I went to specialist after specialist, from podiatrist to pediatrician, and nobody knew what was wrong. My other foot started swelling as well, and still we had no idea. Around the time I was ten, I started getting ingrown toenails due to my swollen toes. When I was twelve, I got an infection due to an ingrown toenail, and ended up in the hospital with cellulitis. My family doctor recommended that I get my toenail cut down to prevent it from happening again. After my surgery, I got ANTOHER infection. After recovering from this one, we really started getting concerned, as we had seen so many doctors and gotten NOWHERE!
One day, I accidentally inhaled some chlorine at the pool and ended up in the hospital AGAIN (it was kind of my second home for awhile). When I was getting ready to leave, I was sitting in a wheelchair in some shorts, and a doctor walked by me, stopped, and said “Did you know you have Lymphedema?” I was so relieved to have something to go on, yet really nervous because I didn’t know where to start, or what having Lymphedema meant for me. After that, we had to find doctors that knew what Lymphedema was, and travel to see them. We often travelled 3 hours from our small town of Carnduff to see doctors in Regina, sometimes weekly. I also had the opportunity to stay in Regina for a week for daily wrapping. This was very helpful, and soon after this, I met Sylvia in Regina, and she started getting me garments.
After this, things got much better! Once I started wearing garments, my feet actually started getting better, and I went from not being able to wear normal shoes and having days where I had trouble walking, to always being able to wear different kinds of shoes (including fancy ones!) and never having days where my feet limited my mobility. Once I moved to Saskatoon, I started finding many more resources, including Pam Fichtner, who was amazing at providing me with more resources and helped improve my Lymphedema even more with MLD (manual lymph drainage). Since then, I have started communicating with other people with Lymphedema (such as Angela Connell-furi) and started talking to people on Facebook. This has helped me so much, because it is so encouraging and supportive to talk to other people who have experienced the same things I am. As of right now, I am waiting for my hot pink night garments, which just became available at no cost to me. It is huge steps like this that makes me hopeful for the future of Lymphedema treatment, and for the future of my own health.
My hope is that my feet continue to become smaller, and that more awareness is raised surrounding both primary and secondary Lymphedema. I encourage anyone with Lymphedema to get involved and help spread the word!
Four limb Primary Lymphedema
Read My Story — Updated March, 2013
Primary lymphedema is extremely difficult to get diagnosed, as I learned the hard way. When I was 21 years old and my ankles blew up like balloons, I was told by many family physicians to just lose a little weight and put my feet up when I could. I was also told by an endocrinologist that my circulation was fine, my problems were all work related (I was a home health aide for the Saskatoon Health Region) and to just put my feet up at work when I could. I wondered if I should do that while I was driving from client to client, or to somehow put my legs up while assisting my Home Care clients? My lower legs and feet were ballooning badly and the pain was immense. At one point, I could not even find a shoe to fit my feet, until I found a pair that zipped down the side. I got a size up and wore them with the zipper completely open. My legs were getting worse and worse and it seemed nobody could help me. I loved my job at Home Care, but it was becoming too difficult. After my shifts I could not walk, or even stand, because of the swelling and pain.
After 6 years of this I began to get numerous infections in my big toes. As I am a Type 1 (Juvenile) Diabetic, I found a podiatrist to assist me with my nails, as these infections were frequent. Dr. Davies took one look at my feet and legs, and said "What is going on with your legs?" I told him that I had no idea what was going on and that nobody was willing to help me. Dr. Davies told me that it looked like I had primary lymphedema and he was going to send me to a specialist, a vascular surgeon who took an interest in lymphedema. I remember looking at him with tears in my eyes and with so much gratitude, and thinking "Someone is finally going to help me." I later saw Dr. Spelay, the vascular surgeon, who looked at my legs and suspected the same thing. She ordered a few tests which confirmed that I had primary lymphedema in my legs. I was then referred for compression garments. This was a frustrating time for me and for the physiotherapist who was trying to get the proper garments. After a long struggle and numerous tries, we came up with garments that just came up to my knees. I thought "Great. This is good enough for now…" as the panty hose style would fall down to my knees within less than a minute.
Two years later, I noticed a lot of pain in both arms, and realised that they were flaring up too. Now I had lymphedema in both arms as well, so I was given ready-to-wear garments for my arms and hands. They weren't very beneficial, because the hand garments had no finger compression. It was getting harder to do things for myself, not to mention that Home Care had become extremely difficult for me, as the compression garments were not ideal for my career. When I would take my arm and hand garments off to do baths, my arms and hands would swell.
I pushed and pushed myself as long as I could and even wondered what other kind of job could I possibly do? I couldn't sit for very long because of my legs, and I couldn't use my arms too much as they would flare up. By May 2009, things had progressed to the point where I had no other choice but to go on Disability.
Iwas very fortunate that Dr. Spelay referred me to the Foeldi Clinic in Germany for my four limb lymphedema and that Saskatchewan Health approved my case and covered my stay at the clinic because the services at the Foeldi Clinic were not available in Saskatchewan or anywhere in Canada. Any other costs associated with travel, accommodations and meals were not covered by Saskatchewan Health. I'm very appreciative to Saskatchewan Health for covering my stay at the clinic. There were so many other costs to consider, airfare, train, and more MLD treatments before my long flight. I really needed a travel companion as I should not be lifting and carrying heavy luggage and I wanted my husband to learn the treatments so we could do some at home. The Kinsmen Telemiracle Foundation was so generous to assist my husband and myself with these extra costs, they also paid for my husbands accommodations at the clinic and he was able to share a room with me. Having the support there was extremely uplifting and helpful. We will always be so grateful to the Kinsmen Telemiracle Foundation. When the time came to go to the clinic I was so relieved that all my questions would finally be answered, as there are no lymphatic specialists in Canada and I was doing all my own research online. There wasn't a question Professor Foeldi couldn't answer. I was at the clinic for five weeks, which was difficult because we had to go over during Christmas and New Year's. It was extremely hard being away from our families at that time, but I was fortunate that my husband could come with me. During my stay, I had manual lymph drainage massage twice a day and was wrapped from the knees down most of the time. My legs went down significantly and the clinic was able to get compression garments for me that fit perfectly! Also my doctor at the clinic confirmed that I had lipedema in both of my upper legs on the sides which explained some of the pain. I am so grateful for the Foeldi Clinic's help and to those who helped me to get there.
When I returned home all the expenses of MLD were my cost, which I find odd considering we have qualified MLD/CDT therapists here in Saskatchewan? Treatments have to be ongoing, and are vital in management of lymphedema. The difficult part in Saskatchewan is finding a practitioner trained in taking good measurements for garments and that we do not have any lymphatic specialists (lymphologists) in Saskatchewan. My reccomendations from my doctor at the Foeldi clinic were at least 2-4 treatments a week, at $60.00-$75.00 a treatment that is completely out of my reach. Not only treatments are costly, but the cost of bandaging supplies is costly and ongoing.
It has been over a year since I left the Foeldi Clinic. Although they did help me a great deal, my lymphedema is still progressing and I have a lot of pain most days. Having lymphedema in four limbs is not easy. Not only my limbs are affected; I get swelling in my face, neck, back, breasts, and stomach. Lymphedema affects my whole body and trying to manage it is a full time job. It has an impact on everything I do. Once a week, I receive manual lymph drainage by an MLD therapist (also compliments of the Kinsmen Telemiracle Foundation) and my husband does MLD on me as well. When we were at the clinic, we were determined to learn as much as we possibly could and he learned how to give me treatments. I still need the expertise of a trained MLD/CDT therapist though. I wrap my limbs as needed, another skill I learned at the clinic. I try to consider myself lucky for the health I do have, but I feel that lymphedema has robbed me of so much: my career, appearance, favourite activities, my social life, and especially my ability to carry children. Depression is a big part of lymphedema for me but I try to stay as positive as I can. I have so much to be thankful for – a very supportive family and friends and most importantly, an extremely supportive, loving and understanding husband.
I joined the LAS Executive to help make a difference for others with lymphedema and to assist in educating our medical professionals and the general public about lymphedema as it is so important to be diagnosed as early as possible and to start treatment without delay. I feel my most useful contribution to the LAS so far, has been putting together this website. When I was doing all my own research years ago, I wish I could have found a local group and website like this. If I can help even one person, then I will be happy knowing I have made a difference.
Prince Albert, SK
Read My Story
My name is Tamara Whitford. I was diagnosed with "Milroy's Disease" when I was about 26 yrs old. (I've had "edema" in my leg since I was 15 yrs old, I now believe that it was Lymphedema but just misdiagnosed…) Two years before I had noticed my left leg swelling and a different size than my right. When I questioned my family doctor about this, she told me to get out and walk, it was weight gain. I did argue that wouldn't it be equal in both legs?? I did seek another doctor, and through my persistence was referred to a plastic surgeon, who diagnosed me, referred me to another doctor… etc etc. I was also referred to physiotherapy, who got me a "3 chamber pump" for my leg, and a Jobst stocking, (that was the texture of window screen… literally). I wore my stocking (chap) diligently, and pumped every morning and at night. But a couple of hours later the swelling would be there, just held back by the stocking. The stocking was a chap, so that I had a silicone band around my waist and up the crack of my buttocks… hmmm not built for comfort or for my career as a Group Activity Aid. When I did voice my concerns to my physio therapist, she just gave me an exasperated look, threw up her hands and said "What else do you want me to do?" Needless to say, I was done with physio.
Now I am 43 years old, and things are quite a bit worse. Both my legs are now swollen, I have massive swellings "Pillows" at both my knees. Due to the swelling of my legs and the pain, I have lost the physical capability for many activities I once participated in: Swimming, walking, biking, dancing (socially). I was recently put off work (Doctor's orders), as the Lymphedema is so severe. I'd worked all my life, and quite enjoyed it. Now it's just something else that Lymphedema has TAKEN from me.
From the MLD treatments I had received from May to October, I have seen great improvement; prior to going my lower left leg, was quite "wooden", and fibrous. That is reduced to a small area in the lower part of the leg. I had been referred to the Physio Dept of RUH (Royal University Hospital in Saskatoon), to be fitted for a pair of Juxta Fit garments. I did receive them, but they were only from my knee to ankle. Being that I have massive swelling at both my knees I questioned this. The Physiotherapist, did not have an answer for me. I wore them but did not see why, as the swellings above my knees only increased, due to the pressure above (my weight), and pressure below the compression garment. Not being satisfied with this, my husband designed and created compression garments that go from my thigh to my ankle. They work wonders, in 3 weeks, my largest leg (left one) went down 10 inches, and I lost 13 lbs!!
I have spoken to the Physio dept of the Victoria Hospital in Prince Albert, and they offer very limited services. There is no MLD covered in the province, and only one MLD therapist (private) in this health region. There is one therapist in the region to measure and fit for garments. And they refer to Royal University Hospital for any questions they may have, as the resources, knowledge and services are limited in Prince Albert. I was told that if I had Lymphedema related to Cancer or Trauma (ie: Burn), there would be more services and help.
Unfortunately, there is currently no coverage for Manual Lymph Drainage Massage in Saskatchewan, nor the compression bandages. I think this unacceptable, should I want to go to Germany to the Foldi Clinic (6 week treatment), or the Wittlinger Therapiezentrum in Austria (3 week treatment), the treatment and garments are covered.
This means that in order to access the treatments I require, I must leave Canada, my family, my support system and the comforts of my own community! Then, and only then will the treatment for my disfiguring disease be covered. Treatment at these clinics in no way cures Lymphedema, (there is no cure for lymphedema) it is the quality and intensity of treatment that is provided there that drastically improves the condition of the affected limbs.
Let me say this again, TREATMENT OUT OF COUNTRY PAID FOR…(which includes but not limited to…. MLD, Compression Bandaging, Walking Program, Exercise Program…)
ALL THESE ARE AVAILABLE TO US IN THE PROVINCE AND NOTHING IS COVERED!!!
- Should I have an Addiction and require outpatient or inpatient treatment, the costs are covered by Sask Health.
- Should I have a Mental Health issue, I can be referred by my Family Doctor to the Mental Health Dept, and my therapy is covered.
- Should I have cancer, my treatments are covered.
Do not get me wrong, these are all very serious ailments, diseases and conditions. What about Lymphedema? I have a chronic, progressive "malady" that without proper care and diligence and attention, could take my life by an infection, from the stagnant lymph in my lymph system.
Lymphedema has not only disfigured me, it has attacked my self esteem, my self confidence and it has robbed me of being able to run and play with my 4 year old son.
I have also been "mortified" while seeing a doctor at a walk in clinic, I had a bout of cellulitis starting, she looked at my leg and gasped and said quite loudly, "YOU have elephantiasis!!" I replied, "NO, I have Lymphedema!!"…. she argued that it was elephantiasis, but I told her, "It may be elephantiasis, but doesn't Lymphedema sound nicer??"
In the midst of having our "condition" recognized, I would also like to point out that we need to educate the medical professionals "caring" for us. This treatment I received was abominable!! I am already self-conscious about my leg, I do not need to be spoken to as such.
My hope is that we by sharing our stories, can give a voice to a very serious condition. Up until recently, I thought I was alone, and a freak. I am so grateful to have been led to the LAS, and Lyphedema online support. It has been a big relief to know I am no longer alone!!
With you in your Trials and Tribulations,
An Update on Tamara's Story
In April 2012, I was referred to the Mayo Clinic by my Dr. as there was no surgery available to me here in Saskatchewan, or in Canada. By May 20th, I was contacted by the Mayo Clinic and my date was being set. My day to be at the Mayo Clinic was June 4th. My Dr. was anticipating surgery to the large masses at both of my knees, or MLL (Massive Localized Lymphedema).
I was to find out that surgery was out of the question, the surgeon who did this, did his last one in the spring, the surgery was quite risky, and took a whole year to recover from!!!
One of my first stops at the Mayo Clinic was to see a Physician who would examine me and then make the referrals to the specialists at Mayo. He did a thorough exam, and that afternoon was off to the lab and to one of the specialists. When appointments are made, it is all on computer, so all departments know what your schedule looks like when they are booking appointments.
I was referred to the Lymphedema Clinic, (which is in the Charlston Building across the street from the Mayo Clinic). Here I met with Dr Schmidt , he asked me the nature of my lymphedma , and what brought me here. He asked why my condition was left so long, I had to explain to him that for Primary Lymphedema there is not much in the way of treatment (that is covered by our health care) in Saskatchewan, had the Lymphedema been Secondary I would have more treatment options. At the time I had the Coban 2 on my left leg. This Coban wrapping was the most treatment I'd had in 16 yrs. My size concerned him, as he had said, never meeting me before he would think the weight caused the Lymphedema, not from a primary cause.
Dr Schmidt emphasized, "Regardless of the cause, the Lymphedema needs to be treated, Lymphedema is Lymphedema." Dr Schmidt prescribed 1 hr of treatment with the Lymphapress daily on both legs, then wrapping. The Lymphapress worked great and in 2 ½ weeks I lost 10 cm on my right leg!!! (The wrapping proved to be more challenging, as the MLL's are so difficult to encompass appropriately) thinking outside the box we used abdominal binders, "girdles". This did work better than the wrap type bandages.
Prior to returning home, I was measured for a "BiaCare", MedAssist, garment. As well as giving compression to the whole leg, it has "pouches" for the MLL's, "to lift and compress". A prescription for a Lymphapress pump was also put forth. I was elated when I found out that both of these were approved, and I am now waiting for their arrival.
I did see other specialists while there, Endocrinologist for a tumor they found on my thyroid, (nothing major, and was told common), Bariatrics for weight loss surgery consult (lymphedema clinic wouldn't commit totally until there was a commitment from me to the Bariatric surgery, as losing weight would greatly help my lymphedema), and the Sleep Centre, and found out I have SEVERE Sleep Apnea. I also found out that Sleep Apnea greatly affects weight, among other things. It was simply amazing what I learned there and how one affliction affects the rest of the body.
I am truly grateful for having the opportunity to go to the Mayo Clinic. Not once did I feel judged, or like a "freak", all the staff were caring, gentle and compassionate. All procedures were explained in a way that was understandable. I did have a couple emotional days, and the staff were so caring. The Mayo Clinic is quite large and expansive, so there were times I needed a wheel chair or motorized wheel chair, although I did have to swallow my pride, it was great to have this option, as my legs (body) could not handle all the walking. And it was wheel chairs that I could actually fit in!!
This experience opened my eyes, and showed me how health care should work, and how different Doctors offices should communicate with each other.
I would like to add, I was devastated that a surgery was not an option, but was happy that I was still able to get help. As well, going there I had expectations that being at the Lymphedema Clinic of the Mayo Clinic, that there would be a revolutionary treatment, or perhaps a "cure". Although I was broken hearted at there being nothing "revolutionary" in regards to treatment, I am grateful that there was still treatment options and garment that would work appropriately.
(In regards to my sleep apnea, in Saskatchewan, at the Provincial Home Oxygen Inc, the equipment I required would cost me $1,700.00. I ordered mine online at CPAP.com $659.00. There is a two year wait list for the SAIL program, and another wait list to be seen by a respirologist. ) I only mention this in case there are others in need, and needing help. I say don't pay inflated costs, go to CPAP.com.
Read My Story
Living with Lymphedema is not easy, but I have learned to make the best of it anyway. My name is Katie Duran, I live in Regina, Saskatchewan, and I was born with primary Lymphedema. Lymphedema is rare, and for the most part, unknown. A lot of women have Lymphedema from having breast cancer, but I am going to talk about what it is like being born with it. Living with Lymphedema is not easy; it is a challenge but that is all I have ever known. For years I have been bullied because I am obviously a bigger person than most, but no one ever knew why. Originally, I did not want my story online or in any magazine, but I decided that here is nothing to hide and it is something I have had to face. I am going to share my story of what it is like to grow up with primary Lymphedema.
Growing up and living with Lymphedema is hard, but no one ever said it was going to be easy. I would always ask myself what I did to deserve such misery all the time. I have always known I was different from everyone else, but I never liked it. No one knew how hard it was living with a weakened immune system, being sick all the time, constantly wondering if you were going to catch some kind of infection. With getting made fun of for something I can't even control, it didn't make matters any better. Despite all the hospital visits I have had, I now live a fairly normal life. I tell myself that even though my legs are different than everyone else's, at least I have legs and can walk; at least I am alive. I am very thankful for that.
There have been several times in my life where I would not be alive today if it was not for all the doctors and researchers that have helped me along the way. Without family, friends, doctors, teachers, co-workers, and everybody else along the way, I would not be the person I am today. I would not be as successful, and I don't think I would have as much ambition as I do today. I want to give back, and have a career where I help people just like others have helped me. I know I have the world ahead of me, with whichever career path I decide to choose; I would like to do something where I am making a difference in someone's life. Just like others have made a difference in mine. Life isn't fair; we all know that, but I know I could always have it worse. I have so much to be thankful for; I know that my Lymphedema can't get me down because a person cannot live life unhappy.
I do manage my Lymphedema by wearing compression garments on both of my legs and taking medication daily for it. I have seen so much improvement within myself over the years; I can only hope that things will continue to progress for the years to come, and that one day there will be a cure for Lymphedema.
When I was little, I wished everyday that there was a cure for my condition so I didn't have to go through the struggles with it anymore. I have learned to accept who I am as a person and live life normally like everyone else. Just because I'm different doesn't mean I have to stay in the shadows because of it. That is why I am publishing this story for everyone to see. Whether you have Lymphedema or any other disease, you shouldn't let it change who you are. Be true to yourself and don't let anything stop you from fulfilling your full potential.
So many of my family and friends have given me motivation over the years to be the best person I can be. If I can give hope to even just one person reading this, I know I have done my job. Everyone has a story if you take the time to listen; this story is just mine.