My name is Juliana Mehadji, I am 32 years old and I am married with two children. I have Primary Lymphodema of the left leg for 6 years now. I live in the Paris region.
I was diagnosed with Lymphedema two years after my first pregnancy. I learned much later that it was Lymphedema because one day I bumped my leg on a table and the swelling gradually went through the whole leg.
I had several consultations with phlebologists (vein specialists) who told me it was a venous problem, so I had injections for one year which just continued to the aggravate my leg.
So I decided to do some research myself and I discovered the condition of Lymphedema and the hospital cognac jay in Paris; Which confirmed what I feared the most- that I would have LE, a horrible and definitive pathology. I saw my world collapse and I entered a great depression that lasted 3 years- even though my leg had become almost normal again as I was using bandages and compression stockings (class 3). But to tell myself that all my life would be like this was intolerable to me.
I got into a vicious cycle and lost a lot of weight which for my height (1m80) was very unhealthy. I went from 63kgs to 58kgs and I realized that my LE also reduced ; so it was pleasant but on the other side I was losing my family and the things precious to me. I occupied myself with nothing but myself and my leg, and saw no one; I was too busy to measure the lost centimeters.
My husband finally had to impose a choice on me because he lived only in my shadow and my pathology, so he demanded that things change immediately. I accepted this and began change my way of living- I started going out again, to look after myself and my family and doing just what was necessary to have an acceptable leg.
I do my bandages when I return home in the evening and after that I take care of my son and my husband, the housework. Every physical effort was done under bandages and a day never passed without wearing my stockings.
I manage to keep my leg stable and free from any cellulitis infections. I pay attention to my weight and go walking, I go swimming sometimes and perform lymphatic drainage with a pneumatic pump machine that my brother bought for me.
I remain very fragile on this subject because I do everything to be the same person, passionate about fashion and family life; And my family supports me enormously because the LE is painful some days; I have the impression that I have bits of glass under the skin, a heaviness, chronic fatigue. I also have pain in the back because to sleep with the bandages there is an imbalance of my body on the bed. Every day is a struggle for us with LE, seeing others in the summer; Enjoying the sun, running, etc … is very difficult because before I was a great sportsman but my leg gets hard and bigger when I make intense physical efforts.
I miss running on the beach in a swimsuit because I am too obsessed of being without my compression stockings. I always watch the calves of other girls to compare and there is always my husband who says to me: “Do you think people look at your calves when you walk? No ! They are looking at the whole person. They do not care about the details and anyway we do not care because you can’t even see your Lymphedema!”
My family encourages me to just live my life; Do and be what you want, because we only have one life and we must enjoy it.
I have spent a lot of time working on myself and getting to where I am today mentally, but sometimes go backwards because I get tired of all this. I took the risk of making a second child and I gained a lot of weight, it was hard but I had a beautiful baby and I lost all my weight and found a leg almost as before pregnancy .
I also created an Instagram page to share my looks without putting my Lymphedema as a priority, because it makes me feel normal and I have fun with it.
I am currently pregnant for a third time and I confess that I am afraid, but this time I am being accompanied by a nutritionist to take less weight and control the swelling of my leg. The other worry is also how I will dress with the extra pregnancy weight, leg and a big belly (haha !).
I do yoga, music therapy to de-stress, and I talk a lot to my sisters and brothers, my husband, my mother and I cry a lot- But the next day the energy comes back because I have no right to give up because my children count on me and I want to live a happy life.
For employment it can be a difficult thing, because when we announce our pathology, employers search on google to see what it is and it can be a disaster! Because the images are scary so employers do not want a person with such a visible disability ; So often I am asked if I am ‘presentable’ and I find this very unsettling in a professional environment.
These days, I have created and launched my own clothing brand which I enjoy developing and find it very fulfilling.
I am thankful for the Chronically Motivated project as people will learn more about this unknown pathology, as well as the solutions that exist to overcome Lymphedema.
Something I can’t live without: My pneumatic leg pump.
You can find Juliana here: