Scleroderma Changed My Life
Start writing a post
Health and Wellness

Scleroderma Changed My Life

But it didn't ruin it.

43
Scleroderma Changed My Life

Scleroderma...

Most people haven't heard of it. Of those that have, many don't know what it is. Those that know what it is have experienced something in their lifetime that I wouldn't wish on anyone.

June is Scleroderma Awareness Month. Scleroderma is an auto immune disease that affects a very few number of people. While classified as an auto immune rheumatic disease, it can be more accurately described as a chronic connective tissue disease. It can affect skin, organs and blood. It's similar to/in the same family as lupus, rheumatoid arthritis, and fibromyalgia.

While I'm choosing not to dive deep into what this disease is, you can find more information at scleroderma.org, if you wish... I hope you look into it.

I'm simply here to raise awareness, to talk about it, to help people understand. This disease, well, it's horrible. At a mere seven years old I watched it take my mom's life. She fought long and hard but it didn't stop the inevitable. You see, there isn't cure. Eleven years ago when it took my mom's life, there really wasn't any treatment.

Treatment is advancing. That's great... but it doesn't take away the pain. The joint pain, the fatigue, the heart ache of losing a loved one, the fear of leaving this beautiful planet, the hard conversations. All of that will remain.

Doctors call this disease rare... and I'm sure it is, I know it is. However, once you meet someone or a family member of someone who has this disease, it is no longer rare. You become perplexed at the symptoms and how little we know about this thing... this "skin-hardening" disease.

I guess I'm here to say that if you've been affected by this, I'm here for you. I love you. I support you. I'm here for you to cry to. I'm here if you need to throw eggs at something because you're angry. More than that, I'm asking everyone to be "that" person. Be the one that loves unconditionally when you hear of this diagnosis.

As I said previously, I hope and pray you never know someone personally who suffers from this condition. It's ugly. It's painful. It lacks hope. But if you know someone, be the beautiful. Offer hope. Be optimistic. I laugh as I say that because I know the difficulty in it, but I also know the beauty of it. Difficult things are worth doing right... so, do them.

Report this Content
This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
Featured

To The Boy Who Changed Me

Just another open letter from a crazy ex-girlfriend.

1405
http://cdn1.theodysseyonline.com/files/2015/10/09/635800144722553570-908383045_993037_10201471592537019_550485816_n.jpg

You’re probably thinking, “oh sh*t, my ex is writing a hate letter and a tell-all about our roller coaster tycoon relationship with terrible fallout.” But if you’re thinking that, oh honey you’re wrong. This isn’t some sappy pity party nonsense and it’s not a trash-my-ex tell all; it’s a journey. And it’s my side of our story to tell…

Keep Reading... Show less
Featured

Dear College Students, Are You Undecided?

The Girlfriend's Guide to College

4350
Dear College Students, Are You Undecided?
https://pixabay.com/photos/college-students-diploma-graduate-3990783/

Up until last week, I always had a major. I was an international business major, finance major, psych major on the pre-medicine track… and now (finally) I am exactly where I should have been when I started college: undecided. I think there is too much pressure as a high school student to have a designated path about what you want to study, be when you 'grow up' and essentially spend the rest of your life doing. As an 18-year-old, I really feel like I tried to pin myself down to a major so that I had a set path to follow and something to look towards. This is probably very conventional and I know tons of people at school who have their minds made up about what they want to study.

Keep Reading... Show less
Adulting

Life Is Messy

Finding who you are in your 20s

4167
Life Is Messy
https://www.pexels.com/photo/shallow-focus-photography-of-yellow-sunflower-field-under-sunny-sky-1169084/

I am 25 years old and just now learning who I am. When I separated from my husband I was terrified of what would follow. I did not know who I was outside of a relationship, nor did I know how to be on my own. It was scary, and I was so lost. I spent months discovering who I was, and what I wanted to be. I am still searching as I believe we never truly know who we are even when we "grow up". I came to the realization that I had been hiding a part of myself for my entire life. Coming out was not easy, growing up in the church made it scary, and hard. I was told growing up that being anything but straight was such a sin, and that i would spent my life in hell because of it. I came out to my parents when I was 25 years old. I picked up the phone and called my mom, and uttered the words "I'm queer" through tears. I knew my parents would be supportive, but that didn't make it any easier for me to vulnerable and raw. Since then, I have slowly started being more authentic in who I am, and not hide parts of me just because of people's shitty opinions.

Keep Reading... Show less
Adulting

Ask Your BFF These 20 Questions To See If They Know You As Well As You THINK That They Do

Ask your best friend these basic questions to see just how well they know you.

42204
Ask Your BFF These 20 Questions To See If They Know You As Well As You THINK That They Do

My best friend has been in my life since we were 3 years old, now that we are adults now, I'd like to ask her these questions to see how well she knows me.

Keep Reading... Show less
Featured

Alone At The Met

I survive a day alone in NYC.

11630
Wikimedia Commons

It was six in the evening. I was sitting in the courtyard of a Renaissance-era Italian villa, glancing around at the statues, most notably one of a boy removing a thorn from his foot. Despite the supposedly relaxing setting, I was incredibly anxious. My phone was at less than 5 percent battery, and once it died I would be completely disconnected from my family and peers, alone in one of the largest art museums in the country.

Keep Reading... Show less

Subscribe to Our Newsletter

Facebook Comments