Kevin’s Story

April 18, 2022

My name is Kevin Collins and I am from Hare Bay, Newfoundland.

I had been experiencing symptoms since the fall of 2016 and was finally diagnosed with scleroderma in July of 2019.  I was referred to a rheumatologist and got in to see her right away. She sent me for more blood work and tests to be done on my lungs and heart.

The initial phase of this disease was very overwhelming and to say the least it was scary. I did not know what to expect and what not to expect, what each day would bring for me or what challenges I would have along the way.

The biggest challenge I face living with scleroderma is the usual daily routines of my life which I can’t do anymore such as going to work, getting dressed, or cooking a meal. My skin is so tight and thick. My hands are always cold, stiff, and sore now from the Raynaud’s. I get tired so fast. It seems like every few hours I need to rest.

You asked me what I would like others to know about scleroderma. My response is this – scleroderma – wow. If you think about it, even the word itself sounds complicated.

So there you have it. From my perspective it’s a very complicated disease that mummifies your body. My skin is always tight and thick. Both my arms are like stone. That is what it feels like on the outside. My insides, of course, are feeling the effects now as well. I just got diagnosed with bowel cancer this past week. Surgery is coming soon as I am waiting on more tests. This disease can cripple you quite fast.

Since I was diagnosed with scleroderma I have found ways to adjust to a routine that works. I have an amazing wife who helps me every day to get through the tough stuff and encourages me to move through it. She totally understands what I live with every day. When I am frustrated because I get so tired and she tells me, “Your body needs rest, go lie down for a bit.” She is always telling me to read more about the disease so I can understand what my body is going through. 

I hope that every person with scleroderma has a great support system because you certainly need it with this disease. Thanks for letting me share my story.

– Kevin Collins