The following was submitted by Andrea Kolarikova (@andrea.kolarik):
What has your experience been with lymphedema?
Until I was 18 (1992), I had no signs of lymphedema. I was an active sportswoman, I played top volleyball and in 1992 at the summer volleyball camp my right ankle started to swell. The coach and I attributed it to a bad rebound during training. But the strange thing was that it didn’t hurt at all and the swelling had gone in the morning. It swelled up again during the day. My coach and I did not understand what was happening. I felt that I had to make a lot more effort, whether jumping or chasing the ball on the field. This is where my journey of visits and hospitalization began. Within a few months, lymphedema affected the entire right leg, starting from the bottom up. I got no advice about bandaging or compression. Almost 2 years later, using an old form of lymphoscintigraphy they found out that I was born with hypoplasia of the lymph nodes and lymph vessels in my lower body. About 2 years ago, the left leg also started to swell.
How does lymphedema impact your everyday life/routine? How does it impact your career or activities?
When I wake up I must take the time to bandage both legs or put on compression stockings. Long periods sitting at a desk or in a car or standing builds up painful pressure in my legs. I really need to raise my legs when this starts to occur. It is hard for me to find work where I am not subject to this pain all day without the opportunity of relief.
It is hard for me to find work where I am not subject to this pain all day without the opportunity of relief.– Andrea Kolarikova
When I go out I do not wear clothing that will show my swelling or bandages. So no tight pants or bare legs. I’m still struggling with that. Lymphedema affects my life by wearing customized compression stockings on a daily basis, which I alternate with bandaging. During the day, I try to elevate my legs whenever possible. My wonderful husband does lymphatic drainage almost every day. I also have a compression massage device at home. I use Mobiderm Autofit or a bandage for the night, but in the summer months it is a problem for me, so sometimes when it is hot I skip night compression.
How do you feel you fit in with the lymphedema community?
For many years I lived in the belief that lymphedema occurs only rarely. Only recently, a few years ago, did I begin to realize that this was not the case, and I came into contact with many people with lymphedema, so far only through online platforms (FB, Instagram).
Have you ever met anyone else with lymphedema?
I have not personally met anyone with lymphedema yet, only through online lymphedema groups and advocates on Facebook and Instagram.
How does lymphedema affect your close friends/family members/relationships, if at all?
My close family take my lymphedema as part of me, it doesn’t affect us in any way. It limited me especially at a time when my sons were little kids and I couldn’t do everything with them that I would do if I didn’t have lymphedema (especially all sports activities). This period was probably the most mentally demanding for me.
It limited me especially at a time when my sons were little kids and I couldn’t do everything with them that I would do if I didn’t have lymphedema (especially all sports activities). This period was probably the most mentally demanding for me.– Andrea Kolarikova
As for my friends, until recently, only a few of my closest friends knew that I had lymphedema. There is very little awareness at all here in Slovakia about what lymphedema is and how it manifests itself. Amongst my friends, I started talking about it only 2-3 years ago.
Neither my colleagues at work nor my bosses knew I had lymphedema. I didn’t feel comfortable talking about it. This limited me at work and in socialising.
What kind of treatment do you undergo for your condition?
I wear custom made compression stockings of compression class III., I alternate circular knitting (Thuasne) with flat knitting (Juzo), night compression Mobiderm Autofit or bandages, I have a device for compression massage at home and manual lymphatic drainage from my husband. I would not get all this in proper quality and intensity in medical facility here in Slovakia covered by insurance. 1-2 times a year I visit my new angiologist 40 km away, who prescribes my annual compression stockings. Of course, my compression consumption is much higher during the year, for which I have to pay.
What do you wish others knew about your condition?
That if I can manage regular self treatment my condition is bearable. Without this it worsens.
How often do you discuss your condition with those outside of the lymphedema community, if at all?
Only if the topic comes up.
What has your experience been with the health care system?
My experience is that in Slovakia patients are in most cases still treated as patients with a vascular problems. My local angiologist was like this. Doctors still have little knowledge about the treatment of lymphedema. The psychological aspect of your condition is ignored. If you don’t have elephantiasis, it’s still just a cosmetic problem, according to them.
Doctors still have little knowledge about the treatment of lymphedema. The psychological aspect of your condition is ignored. If you don’t have elephantiasis, it’s still just a cosmetic problem, according to them.– Andrea Kolarikova
It is very difficult to find and get to the right doctor. As for the treatment of lymphedema in medical facilities, it is at a low level, or not at all. You have to look for private treatment, which is financially unbearable for most patients. In general in Slovakia insurance companies cover only a low percentage of treatments and aids for this condition.
What would you like to see for lymphedema within the next few years?
Increasing knowledge of lymphedema in our doctors, associated with early diagnosis, adequate and affordable treatment paid for by insurance companies.
Are you involved with the lymphedema community (in terms of fundraising, volunteering, attending events, etc.)?
It is time to establish a lymphedema community here in Slovakia and hear our voice. Great challenge!
It is time to establish a lymphedema community here in Slovakia and hear our voice. Great challenge!– Andrea Kolarikova