Scleroderma Is Complicated to Explain and Challenging to Live With
My teenage daughter bounds excitedly into the room to show me her phone. The screen displays a message adorned with fancy scrollwork designs. She reads the words “June is Scleroderma Awareness Month!” Her smile radiates happiness.
I know I should be elated that awareness is being spread through the popular social platform TikTok. But my heart aches every time my children talk about my disease.
Since they were born, I’ve wanted to protect them. This was just another reminder that I can’t protect them from the harsh reality of this illness. It changes the way I look and dictates what I can do. It fills my days with appointments, and the medical expenses drain our pockets. And now it has found its way into my daughter’s free time.
It’s not easy to explain.
I asked my beautiful girl what she would say to someone if they asked her to explain scleroderma. At first, she described how the condition makes it hard to breathe and causes the whole body to feel pain. Then she looked at me and said, “I’m not sure what it is.” Her face was so sad. She looked disappointed in herself for not knowing how to answer my question.
I immediately reminded her that this autoimmune disease is rare and challenging to understand. After all, many doctors would have a hard time explaining it! I’ve heard many stories about patients watching their doctors Google it while they sat there awaiting treatment.
If someone asks me what scleroderma is, I try to keep it simple and straightforward. It’s a disease that has no cure — yet! It attacks the body inside and out. It can make the skin hard. It often shrinks all the features on a person’s face, making their nasal passage and mouth smaller. It may go after internal organs, scarring them badly and causing damage that can be life-threatening. But most importantly, it affects every person differently, so doctors have a hard time treating each patient.
It’s grueling to live with.
Rarely has this explanation been enough. After explaining the issues it can cause, the door usually opens to suggestions. I strongly believe essential oils, healthy diets, and alternative medicine are beneficial. But these things cannot cure scleroderma.
If I’m truly going to help spread awareness, I need to include the cold, hard truth behind this disease. Like many others, I have tried everything and I’m still not cured. From eating completely organic, plant-based diets to diligently using essential oils, my disease continues to progress. In fact, it seems that the healthier I am, the stronger my cells are, and the harder they attack my body.
Before people can offer suggestions, I find it helpful to explain how this disease is like having an allergy. The body overreacts for no good reason. I also use transplant patients as an example. A new heart may be seen as a foreign object, so the immune system will fight to kill it. Although my organs are my own, my body is still trying to destroy them.
Scleroderma is a debilitating and relentless disease. It constantly attacks the body, but the cause is unknown. It can affect people of any age, sex, or race. Even healthy and fit people can develop this autoimmune condition.
The one thing we know with certainty is that people with scleroderma are warriors! They are living with a painful disability while praying to survive another day.
Help us fight by spreading awareness.
Spreading awareness doesn’t have to be time-consuming, nor does it require financial resources. Simply sharing the name of the disease helps tremendously.
Take a moment to share the word “scleroderma” on your social media accounts (TikTok, Facebook, Instagram, etc.). You can simply write, “June is Scleroderma Awareness Month.” Or, you can share websites, articles, or even columns like this one.
The more people hear about this rare disease, the more recognition it will get. This helps patients, organizations, and lawmakers gain more leverage for funding research that could be the key to a cure. Maybe one of those 14-year-old TikTok users will be inspired to be the hero that finds it!
If you want to get more involved, you can organize fundraising events in your community, design merchandise to raise money for research, or perhaps share your personal story on social media. Encourage others to learn more by visiting informational websites or reading patient blogs. Big or small, every effort to raise awareness makes an impact.
Help us raise awareness and improve the lives of those suffering from scleroderma. There are so many of us that are fighting for a chance to survive this battle.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.