John's Story
In the late 1990s, while rehabilitating from foot reconstruction, I found myself continuously out of breath. I thought it was due to being confined in a cast and inactive for four months. When the cough progressed to the point where I couldn't utter a sentence without coughing, however, even I realized it was time to seek help. After months of tests and exploratory procedures, including an open lung biopsy, I was diagnosed with progressive systemic scleroderma with lung involvement. The prognosis was rather dire: a potential heart/lung transplant, which at that time had an extremely low success and survival rate.
An initial treatment plan seemed to work, and we were all ecstatic - until the scleroderma came back. The treatment no longer worked, and my condition deteriorated rapidly; I was told it was time to get my affairs in order. It wasn't until I travelled to the University of Colorado did they find something that was effective, and I began to respond positively. My lung function had increased so dramatically and was so far outside the expected range that they made me take the pulmonary function test four times on different machines - They had never seen these results before! I was able to continue my career as a fish biologist and resume SCUBA diving. That was about 25 years ago.
I became aware of foundations which supported scleroderma patients when friends asked me to join them for a Scleroderma Walk with my name on their T-shirts, a very heartwarming, yet humbling experience. I had remarkably recovered; many present that day on the walk had not. That event planted the seed which ultimately led to the Scleroderma Outreach NW Board as a way for me to give back.
An unasked question was, why? That answer was more complex. When I was finally diagnosed, I was told that they now knew which “box” to put me in; I'd never heard of scleroderma and had to look it up. I knew no one who had this disease, nor where to turn. My family and friends, who were instrumental in my recovery, couldn't understand what I was going through. Those of us challenged by this disease know what it is to feel frightened, confused, and totally alone. While I recovered, I often wondered why I was blessed, while others were not. The answer is to assist others on this journey, and pay forward the kindness, love, and encouragement that was so selflessly provided me. And most importantly, to offer hope. We can beat this, and I'm committed to being here to support that effort!
Katy's Story
My journey with scleroderma began in 2013 when I started experiencing frequent heartburn and fingers that changed color when I was cold or anxious. I had no idea at the time that the two were related. When I developed a couple of painful ulcers on my fingertips that lasted for weeks, my family suggested that I go see a rheumatologist to try to get to the bottom of my mysterious symptoms. After about a year of treating the ulcers, monitoring bloodwork, and seeing the rheumatologist regularly, it was determined that I had limited systemic scleroderma and Raynaud's phenomenon.
I had never heard of either disease, so I naturally looked them up on the internet. What I read shocked me to the core. I found myself in tears numerous times and feeling very alone. I had no idea there were other people in Idaho living with these diseases until I decided to attend a support group event in Boise. I met some amazing people at the event and decided that joining the support group would be a great idea for me. Over the next several years, I found education, friendships, and fun through the support group. I made it a goal to ensure that people diagnosed with scleroderma never had to feel alone. I volunteered as a co-leader for the support group for a couple of years until we had to put things on hold for the pandemic, but I've maintained the close friendships that have developed from that very first event. I'm grateful for the Scleroderma Outreach Northwest support group and the gap that it is now being filled in helping people navigate this difficult disease.
With the help of my rheumatologist, I've been able to manage my scleroderma well over the last 11 years. I take different medications to help reduce my symptoms, and I've changed some of my behaviors to help reduce the effects of Raynaud's on my fingers. For example, I always have gloves with me, regardless of the season, and I minimize my time outside when the weather is cold. I have a great network of support, including my family, friends, and support group members. With the help of these people, I face my scleroderma head on and no longer see it as a hindrance to a long, productive life.
I've been an elementary teacher for the last 16 years and feel I can successfully do my job with a few modifications due to scleroderma. I chose to share my diagnosis with my colleagues and have a great system of support in the workplace as a result. I'm “Mom” to my 19-year-old son, who is the joy of my life. Together we like to attend sporting events (especially going to Mariners games), play board games, travel, watch movies, and go on other adventures. He has been one of my biggest supporters and motivators to keep on keeping on, even on the hard days.
Joyce's Story
My scleroderma story started in Summer 2010. I was a wife, a Mom (I had a 16 year old at home, and 2 adult kids on their own), and a Bank Mgr who worked full time. Height of my career so to speak.
I started having trouble with a nagging cough, that eventually developed into trouble breathing. I was being treated for GERD, pneumonia, asthma, given an inhaler (that did nothing) and ZPak's for sinus infections. During all of this, I was working as a Credit Union Supervisor managing a branch. During the Fall of 2010, I was having trouble with my hand and fingers going numb, and having swollen fingers, and what I learned later on was Raynauds attacks. I was sent to a specialist for carpal tunnel surgery. He took one look at my hands and said "you have sclerodactyly, with secondary Raynauds." My spouse and I looked at him dumbfounded - it was like he was speaking a foreign language. Unfortunately he did not expound on it and said to follow up with my PCP. First lesson here - don't settle for poor bedside manner in doctors. Get another opinion.
A short time later, around Christmas time in 2010 - I couldn't get a deep breath. I was exhausted walking to the car, taking a shower, walking into my work etc. I cried at the thought of having to stop and put gas in my car. My PCP had me do a walk test with an oximeter and it was 80% when walking, and I was struggling to breathe and keep going. He started putting all the pieces of the puzzle together and said "it seems like you may have something auto immune" happening. He sent me home with oxygen and strict orders to wear it and use it. He then referred me to a Rheumatologist, and Pulmonologist who both squeezed me in that same week. I had several tests and on my 45th birthday February 12th, my Rheumatologist gave me the news that I had scleroderma.
My Pulmonologist told me I had CREST syndrome. My lungs had been affected, and showed "ground glass" in the bottom of them on an XRAY. I also had ILD - Interstitial Lung Disease. He said it was aggressive and progressing. He said you need to wear your oxygen fulltime. (I was so embarrassed having to wear it and pack it around. Silly now that I think back.) I also took Cytoxan for about 15-18 months, a pill form of Chemo. After that I was put on Mychophenolate (Cellcept) and took that up until about 3 years ago. These were taken along with a whole list of other medicines.
So, I was wearing oxygen fulltime, my hair fell out, I looked sick and felt sick. I was packing around my oxygen tanks, in what looked like a violin case to the Credit Union. It was decided that I had to retire early - as I was unable to keep up with the 40 plus hours required of my job. So by May 1, 2011, I was retired and had to apply for Social Security Disability. So from diagnosis to retirement - it was less than 3 months. It was super humbling to retire and be home sick dealing with this "fulltime" illness. But that is what it was. All consuming.
Support group meetings where suggestions were made, really helped me better care for myself and understand how important self care is when you have an auto immune disease.
Ever so slowly my PFT #'s(breathing tests) started to improve. Maybe all the medicines I was taking started to work together? Whatever it was, I slowly continued to improve.
I had a team of doctors that I listened to and tried to follow their instructions. I sought out others with this disease and found a friend named Helen who lived near my community and she and I started meeting - and then another lady named Tracy joined us. Tracy - started the North Sound Scleroderma Support Group - where I met so many wonderful people, who have been instrumental in helping me feel that I am not alone in this world battling this terrible disease.
When you have an auto immune disease it is so important to be your own advocate. You have to speak up and educate yourself on your disease. Get involved. Share, and learn from others.
Having a positive attitude, faith in God, along with loving supportive family and friends has made this challenging disease livable.
