In the television program “You Will Have It,” viewers were introduced to Mars Alexander, a man with Ehlers-Danlos syndrome who lived life to the fullest despite his health challenges. Alexander’s positive attitude left a deep impression on presenter Emma Wortelboer, but tragically, he passed away shortly after the recordings.

“I think there is a good chance that things will not be much better and that I will actually only go backwards.”

— Mars Alexander

Ehlers-Danlos syndrome is a genetic connective tissue disorder that affects multiple organs and tissues. Connective tissue is found throughout the body, providing support and structure to organs and maintaining their proper function. Mars Alexander was diagnosed with the condition at the age of 20, after years of unexplained symptoms and surgeries. “I often had my kneecaps out of the bowl and I had surgery on it, but nobody really knew what I had. It is pretty rare and in the end I was diagnosed at the age of 20,” he explained.

The disease has had a profound impact on Alexander’s life, causing instability in his spine and leading to paraplegia. “It is a disease that affects many organs and tissue. Connective tissue is sitting throughout your body, it ensures firmness with your organs and that everything stays in your body,” he said. “So it gives me no support at all. Now my spine is also so unstable that I have sustained a paraplegia. So in the last 3 years I have become 100 percent wheelchair-dependent,” he explained.

Despite his health challenges, Alexander maintained a positive outlook. When asked if the disease made him angry, he replied, “No, I’m never really angry. I just take a drink and then I have fun, right? As long as I can do something fun to feel better mentally, then it is all worth it for me.” Alexander enjoyed going to parties, but the consequences of such an intensive evening were evident the next day. “I woke up again last night and my joints are out of the bowl,” he said. “My hips lower out again and my jaw is completely locked again.”

Alexander’s resilience was evident in his attitude towards life. Despite the intense pain and neurological damage, he rated his life as a 9 out of 10. “It is actually going pretty well. It has really been much worse. There have been periods that I could not eat, that I was constantly being out of consciousness and could not be alone for a moment because it was dangerous. Although things are getting better, the intense pain has remained. However, he does his best to keep himself involved as little as possible. “That pain is there, things keep shooting out and the neurological damage remains. So then I might as well take it, enjoy it and just keep doing that nice,” he explained.

When asked about his future, Alexander remained optimistic. “Sure, sometimes I also have a bit of fear for it, because you just have no idea. I think there is a good chance that it will not be much better and that I will actually only go backwards.” Unfortunately, his condition quickly deteriorated after the recordings, and he passed away. “To our great regret we must report that Mars Alexander died of the consequences of his condition,” the show announced.

Mars Alexander’s story serves as a poignant reminder of the resilience and strength of individuals living with chronic illnesses. His positive attitude and determination to enjoy life despite his health challenges have inspired many. Ehlers-Danlos syndrome is a rare condition, affecting approximately 1 in 2,500 to 1 in 5,000 people in the United States. The condition can vary widely in severity, and symptoms may include joint hypermobility, skin fragility, and cardiovascular issues.

While there is no cure for Ehlers-Danlos syndrome, advancements in medical research and treatment options offer hope for improved quality of life. Organizations such as the Ehlers-Danlos Society provide support, resources, and advocacy for individuals and families affected by the condition. The society’s mission is to “improve the lives of people with Ehlers-Danlos syndromes and related disorders through education, research, and advocacy.”

Mars Alexander’s legacy will continue to inspire those living with chronic illnesses, reminding them that a positive outlook and determination can make a significant difference in their lives. His story highlights the importance of medical research and support for individuals with rare conditions, ensuring that they receive the care and resources they need to live fulfilling lives.

You Will Have It can be seen every Tuesday at 9:25 PM on BNNVARA on NPO 3.