I am Nicole Ugandan female aged 36 years old, I have had lymphedema since 2016. At first, I hadn’t realized it right away. I had a mild accident while I was working. I fell on some hospital steps where I gone to carry out some research work. When I fell, I took it lightly. I hurt my right leg. I got a swelling which unfortunately I didn’t treat as a threat. In 2018 after seeing some doctors at Mulago that’s when I was diagnosed with lymphedema. I was scared and frighten. After that I soon started to experience severe cellulitis.

Since then, my life hasn’t been easy. I faced a lot of stigmatization from my work colleagues and even family. Both internal and external. My social life changed as I couldn’t hang out with my friends anymore. I had to resign from my work place because my bosses started to question my ability to work as I always asked for many days for sick leave. Most days were so bad the cellulitis affected me. I got fevers, and my legs got heavy. Eventual my other left leg also started to develop the same problems as the right leg.

The challenges I have face with my condition are many like Loss of work, Severe stigmatization, Inferiority complexes. (Feeling you look bad this not worthy of anything), Lack of a social life, Severe depression, Limited work offers even when I felt I was capable of doing work. Weight gain caused by the depression of staying home

The compression socks helped me. Though not much as they also hurt me as they were too tight. I also had a surgery in February 2024 from Bugema University by Dr. Prof. Med. Thiha Aung from Germany under the Lymphedema Warriors Association. Which helped me tremendously. Since then, I was introduced to compression therapy and management which involves using compression garments and bandages. They have really helped a lot. So, I also introduced in a diet and mild exercises as a way to reduce the weight.

I have encountered a lot of misconceptions and stigma regarding lymphedema. Many people have theories of the disease being elephantiasis or cancer. Some even go as far as associating it with witchcraft. Naturally am an introvert. My words and interactions with people are limited. While I could have addressed some of these misconceptions, I regrettably chose to ignore them. This was mostly out of fear and inferiority complex.

How I stay positive amidst all the struggle. I sought a medical counseling sessions, I started exercising and dieting, I read the Bible and pray every day.

My advice to anyone facing the disease or has just been newly diagnosed with it. First and foremost is acceptance. Accepting what it is. From acceptance one is able to face the disease head strong. Seeking treatment and adhering to it. Dropping the shame, fear and stigma. This will help one live their days in positivity rather than negativity and having a positive attitude. Praying and have continuous faith, that God will make a way.

Advocacy. We need to create a lymphedema support system and group, creating a page on social media platforms for all to access, Being open about the disease. Not living in fear or intimidation. My hope is that one day, a lymphedema treatment center will be set up in the country. So many of us are living in ignorance because we don’t know where to go.

Also, a lot of awareness about the disease. Starting from the doctors, health workers and the general public as well. The awareness will break down the stigma and help people seek early diagnosis and treatment. Also, my biggest hope is that one day, a cure will be found for the disease.