My Rare Condition: Reflecting On My Journey With Scleroderma

Today I want to share with you about my rare condition and spread awareness about life with Scleroderma. February is Rare Diseases Awareness Month I am proud to be part of a community of warriors who are living with and fighting against this condition every day.

Scleroderma is a rare autoimmune disease that affects the skin and connective tissues of the body, causing them to become hard and tight. It can also cause damage to internal organs and blood vessels, making it a complex and challenging condition to live with. Sclero means ‘hard’ and derma means ‘skin’, therefore in easier terms it is a hard skin disease.

I was diagnosed with scleroderma several years ago, and at first, I was completely broken. I felt like my body was turning against me and I didn't know what the future would hold. I was scared to look in the mirror because I was changing so dramatically that I felt like a monster.

Accepting my new face was a long and difficult process. Every time I saw myself, I was searching for the face I was born with, but it was nowhere to be found. Even today, I still have moments where I long for my old face.

Over the years as the disease continued to progress, I was losing my mobility as my joints stiffened and my fingers started to disfigure. The memory of me trying to hold a plate and realising my fingers were too stiff still sends shivers down my spine. It was at that moment that the severity of my disfigurement became crystal clear.

Unlearning everything I once knew and finding new ways to live was an incredibly tough and humbling experience.

I would cry myself to sleep every night and my mum would always notice my swollen eyes every morning. Her embraces made me feel comfortable and assured me that I was not alone. My family has been by my side through this journey and I don’t think I could have been where I am without them.

As I started to learn more about my condition and read about others who were living with it, I realised that I was far from alone. The thought of turning into a "monster" had me in a constant state of anxiety, but when I shared my story on a local TV show, I was overwhelmed by the outpouring of support online and encouragement from others who were also battling scleroderma. It was so comforting to know that there were warriors living in my city! I had a sense of relief because I wasn’t alone, there were others like me who shared the same struggles. Feeling relatable is so crucial for people with rare diseases because not everyone fully understands what they are going through. It definitely makes a positive impact on their emotional well being.

Looking back now, I want to reach out to that scared, confused young woman and let her know that it does get easier. Despite the challenges, I've learned to live with my condition and embrace it. I made a promise to myself to live my best life and not let scleroderma define me, and it's that promise that has kept me from spiralling into darkness.

After years of feeling lost, I knew I had to take action to prevent others from experiencing the same isolation and misery that I went through. So I made it my mission to raise awareness about scleroderma and share the stories of warriors like myself to inspire and empower them. And let me tell you, that dream came to fruition in a big way with the launch of The Farah Foundation. If you want to learn more about the badass work we do, follow @thefarahfdn on social media.

Living with scleroderma ain't for the faint of heart, but it's worth it to know you're making a difference in someone else's journey. I've come out on the other side stronger and more resilient. Each day is a journey I take to love myself more than I did the day before. And let me tell you, if someone had told me 15 years ago I'd be meeting and connecting with amazing people, giving talks, built an online fanbase called #TeamReal, I’d have asked you to shut the front door!

That's why it's crucial to get out there and shout your story from the rooftops. Get involved, share your experiences and educate yourself and others on these conditions. Together, we've got the power to create real change.

I'm grateful for the strength and meaningful connections I've gained through this journey, and proud to be a part of a community fighting for warriors affected by rare diseases. It is my hope and belief that by continuing to spread information and supporting one another, we can make a positive difference in the lives of warriors living with rare conditions.

Let's join together to make a difference during Rare Diseases Awareness Month! We'll make a difference, one warrior at a time.

Looking to show some love for rare disease warriors? Who says fashion can't have a purpose? Rock those blue, green, pink or purple threads to show support for rare disease warriors this month.

Take care and keep being wonderful!

Until the next feed, please share this newsletter with your audience.

Enthusiastically,

Farah Khaleck