Despite all the difficulties life throws their ways, many people with a rare disease diagnosis make it work. They build a career, start a family and even make a name for themselves. History remembers them due to their amazing life stories and achievements. Forget about Captain America or Batman, they are life’s real superheroes.
Living with A Rare Disease Diagnosis
Getting diagnosed with something that’s not at least somewhat common can be a life-shattering experience. However, knowing that other people have lived successfully with their illness is a true beacon of hope. Here are three amazing and candid stories to inspire you and guide you through this trying time.
1. Karma Tshering
Out of the people struggling with autoimmune hemolytic anemia, the case of Karma Tshering, a young Bhutanese girl of just 17 years, is certainly one of the more dramatic ones. Both she and her parents found out that she was suffering from AIHA only four months prior to the girl being rushed to the hospital in Kolkata, India. Her hemoglobin count had dropped under 1.5 and her organs were failing.
It was there that the doctors found out systemic lupus erythematosus was behind the girl’s rare disease. She was put through an intensive therapy program which lasted three weeks. This is what saved her life in the end. Karma was given blood transfusions, while at the same time chemotherapy neutralized her confused antibodies.
The body’s RBCs have a lifespan of up 120 days. In the case of AIHA, this period is reduced to just a few. An erroneous response is triggered in the body, causing it to identify its own red blood cells as foreign. The immune system mistakenly attacks them, killing them off and thus lowering the count, which leads to severe anemia. Although mild symptoms include fatigue, drowsiness, and pallor, in extreme cases a situation like Karma’s is totally possible.
2. Lizzie Velasquez
When she was 17, Lizzie Velasquez went on YouTube to play some music. There, she found an eight-second video entitled “The ugliest woman in the world”. She clicked on it but wasn’t prepared to see what followed. The woman in the video was her.
Lizzie was born with a disease so rare that only one other person in the world besides her has it. It’s called Marfanoid-progeroid-lipodystrophy syndrome, and doctors barely know what it is and why she has it. She is unable to gain weight and has severely impaired vision.
But her illness and her bullies didn’t bring Lizzie down. In fact, they made her stronger and motivated her to pursue her career as a motivational speaker and anti-bullying advocate. She graduated from Texas State University with a degree in communication studies and a minor in English.
Lizzie does not live an easy life. She has had to undergo multiple surgeries ever since she was born, and she must follow a special diet which requires ingesting up to 8,000 calories daily just so that she can survive. However, she never let her hardship bring her down. This is what makes her a true inspiration and a real-life superhero.
3. Leon Botha
Known to fans of South African hip-hop duo Die Antwoord as DJ SOLARIZE (sometimes styled as $OLARIZE), Leon Botha was a progeria patient who managed to accomplish his dream of becoming a successful disk jockey in the rap scene in spite of his disorder. He regularly opened shows for the band and gained international fame due to appearing in their video for the song Enter the Ninja.
Although Leon sadly passed away in 2011, at the age of 26, he is the oldest known survivor of progeria in the entire history of the disease. Besides his prolific career in the Cape Town hip-hop scene, he was also a talented artist. Although he lacked any formal training in this direction, his paintings were even the centerpiece of an exhibition held in 2007 in Durbanville.
Living with a rare diagnosis is difficult, painful and sometimes even downright glum. But hope and ambition are wonderful things that can help you overcome even the toughest of challenges. These three people are proof enough of that. Therefore, the next time you feel like your illness is ruining your life, turn your life around like Lizzie Velasquez did, or enjoy it to the fullest like Leon Botha.
In life, we write our own stories. Even though your disorder might make it difficult to make something great out of your narrative, the possibility is there. You just need to give yourself time to find it.