Hi, my name is Nathalie and I have secondary lymphedema because I suffered from lymphatic filariasis. This is my story…
At the age of 13, I found out my feet were swollen (oedema) – Well, my mom noticed it, and I did not know. My feet were swollen, they were warm but not painful, which is probably why I did not notice anything before my mom pointed it out.
My journey started; the multiple trips to the hospital trying to find out the issue, the sleepless nights asking myself “What did I do wrong?” Why is this happening to me? My self-esteem was crushed. All eyes were on me. Well, the eyes were on my feet and I hated it.
With time, the disease progressed, and my feet would swell so badly that my skin would feel very dry and thick (like an elephant’s skin), especially in warm weather.
In the Democratic Republic of Congo (where I am from), it gets hot, I mean the temperature rises up to 35–40 °C sometimes. That did not help. I would suffer from heat oedema; which occurs when it’s too hot and your blood vessels expand (dilate) to allow fluids to leak into surrounding tissues. That is how your body naturally keeps itself cool in warm weather.
I also suffered from erysipelas, a skin infection that can affect people with lymphedema. The condition would cause so much pain that it would make it hard for me to walk. I felt cursed. It was really a nightmare!!
The worst thing about the situation was not knowing what my condition was. My friends and teachers at school had questions, people at church had questions, and I could not answer them because no one knew what was wrong with me. Not the doctors, not my parents. That lasted six long years.
Being Congolese, I heard so many stories. Some said it was witchcraft, that I was sacrificed by my parents. I mean, science could not explain it, so the supernatural had to. The love I received at home did not feel enough because outside, I received side eyes and hurtful comments. At school, I was the “student with the big feet”.
Due to lymphedema, I could not wear closed toe shoes like everybody else, so it was easy to spot me among the students. At least, that is how I felt.
At some point, on top of what the doctor told me, I had to do my research to understand my condition. Here is what I found:
Where Did I Get Lymphatic Filariasis?
I was born in Kinshasa, the capital of the Democratic Republic of Congo (DRC). My parent’s house, where I was raised, is a few km from the Congo River. That area is considered a high-risk area to contract lymphatic filariasis.
How Did I Get Diagnosed?
Swollen feet can be an indication of a heart condition, I had an ECG done to assess my heart. Once my heart was confirmed healthy, the doctor ordered a lymphogram to assess the drainage of my lymphatic system. To understand the functions of your lymphatic system, please check out this article.
From the lymphogram, the doctors in DRC concluded I had primary lymphedema – When your lymphatic system has not formed properly. All I received for treatment was physiotherapy and stockings to help with the lymphatic drainage.
At the age of 19, I was diagnosed with secondary lymphedema caused by lymphatic filariasis, in India, at MIOT Hospital.
My treatment included:
- Hydroliposuction in both legs
- Hetrazan (Diethylcarbamazine – an antiparasitic drug used to treat filarial infections) for 4 weeks
- Physiotherapy
- Stockings
The damage to my lymphatic vessels could not be reversed, but the treatment put a halt to the disease’s evolution. That made a huge difference!
My Life With Lymphedema
Although the medication I took killed the worms, my lymphatic system is still damaged. I have secondary lymphedema, but my legs do not swell as much as they used to and my skin does not get thick and dry like an elephant’s skin any more.
When it gets very hot (in the summer), I still get heat oedema and when I am pregnant, it gets worse, but it is manageable.
As someone with lymphedema in your legs, always keep some stockings in your closet. You might not wear them every day, but someday, you might need them.
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