Testimonies and survival stories
Ester Lileka
I’ve since joined a community of people like me, living with rare diseases.
Although we might have the same conditions, we are going through different things. But all in all, we are there to support one another, because at the end of the day, we’re swimming in the same water.
Apart from the Myasthenia Gravis warriors’ community, I’ve met others, Lupus warriors, Scoliosis warriors, Diabetics, and one lovely boy who is close to my heart, living with Rheumatoid Arthritis.
Having gotten to know all these people, I only ask those in a unique position to assist us to continue doing so, and be encouraged by our strength to keep going. It is often much easier to give up. Your love and care, but most of all, your unwavering support, is all we need.
Do not give up on us, and we will try our best not to give up on life.
One day, my doctor applauded my circle. He noticed that I have the strongest support, someone is always there to pick me up, drop me off, or simply keep me company while I wait for medical assistance. Honestly, I believe that has continuously given me a reason to keep fighting.
This journey has been one that reminds me:
“Alone I can do so little, but together, we can do so much.”
Celebrate yourself, baby. Nobody knows what it takes to be you.
Amanda Rust
I have never felt so knocked down in my life. Even though I’ve had to deal with a few punches in life, facing this new and uncertain future hits differently.
I protect my lonely feelings by reminding myself that I am not alone in this journey. I believe we can be part of a new generation of discoveries in the medical field — discovering new ways or medications to protect or share ourselves through the thorns of life.
Unfortunately, humanity has lost so much direction that the world forgets to pause, to stand in silence, and truly see what we do have around us.
We are all advocates in some way. But one thing always works:
Standing together.
United together.
Believing together.
I believe that even if there’s only 2% of hope at the time of diagnosis — 2% is still something. It’s not nothing. And that gives us hope… to believe and trust again.
Pamela Kashamba
I was diagnosed with Myasthenia Gravis in January 2020 by Dr. Kumire, marking the beginning of a challenging journey with this autoimmune disorder. My independence shifted as I had to rely on others due to severe fatigue, muscle weakness, vision issues, and difficulty breathing. The first year was particularly tough as I adapted to medication and to my condition.
From 2020 to April 2024, I navigated the ups and downs of treatment, experiencing significant physical changes, including weight gain and altered facial features. Connecting with Corachia, someone who shares my condition, was invaluable in helping me process the experience, especially since family and friends struggled to understand this rare disorder.
Then, in May 2024, everything changed, I entered remission, meaning I no longer required medication to manage Myasthenia Gravis. It has now been a year, and my focus remains on maintaining my health, which has been a truly rewarding experience.
Ueritjiua Patirovandu
I avoid crises by sleeping and resting (no matter the time of day) whenever my body requires it.
Always put yourself first. Listen to your body and take small breaks — it’s vital.
Self-care matters. Avoid stress and overworking.
Always do what makes you happy.
