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Rebecca Barnard

2017-04-06 10:48

Amy's Story

Hi, my name is Amy and this is my story. I wrote it in a form of a letter from myself writing to my disease scleroderma. I hope that I can inspire at least one person not to give up and to keep fighting no matter what is put in front of them. We are all entitled to a life of happiness in whatever way, shape or form it is manifested.

Dear Scleroderma,

When we first met I was a 19 year old freshman in college. I was working as a Dietary Supervisor and was at the beginning of my adult life; you took that away from me and so much more. Growing up I had the best childhood - amazing parents who cared that we had dinner as a family every night and a family vacation every summer. We camped, went fishing and swimming, and of course roasted marshmallows. I was always excited to learn something new, and as I entered my teenage years a passion for helping other people started to blossom. I started a job at a local nursing home and attended vocational classes in Nursing. I had found my niche.

I first noticed you scleroderma as a nagging pain in my wrist and elbow. Then like so many others who have met you, my fingers started to turn blue. It didn't take long for me to realise that something was wrong with my body and low and behold there you were.

I was diagnosed in 2001 with the most severe form of scleroderma: diffuse systemic sclerosis; this type of scleroderma causes scarring and thickening of the tissues, including internal organs. At first I don't think that I grasped the severity of the diagnosis and the finality of you scleroderma. My life pushed on as normal and it wasn't until I started to get severe digital ulcers on my fingertips that my eyes became open to the horrors of the disease.

Along with the ulcers I started to develop scarring on my lungs (aka pulmonary fibrosis) and I had acid reflux so severe I would wake up in the middle of the night with the contents of my stomach coming out of my nose and mouth. My fight had started and I wasn't going to take it lying down. I dove headfirst into researching anything and everything I could find on systemic scleroderma, which unfortunately there was not a lot of. After days of searching the web, I came across a world renowned doctor in Pittsburgh who had specialised in scleroderma for over 49 years. I called up the next day and made arrangements to be seen by the end of the week.

When I stepped through the doors of his hospital for the first time I never looked back. All of the doctors I met were not only familiar with the disease, but had treated many patients who suffer from the same form of disease as I do. I didn't have to explain why my skin was so hard and tight, or why I couldn't open my mouth very wide, or why I have red spots all over my body - and no, they are not contagious! I had found my people. Medical professionals who were familiar with scleroderma and had treated it before, and researchers who were working hard on finding better ways to treat scleroderma, and ultimately one day to discover a cure.

The University of Pittsburgh Medical Center (UPMC) changed my life and I have been going there ever since. The road has not been easy in the 15 years I have had this disease. I have been to three different states - Pittsburgh, Boston, and North Carolina - on my quest for treatment. Not to mention my travels across every inch of Buffalo and up-state New York. I have had a lung biopsy; surgery on my stomach, oesophagus and on both of my hands; two cardiac ablations; and three full evaluations for a possible lung transplant (which I have been turned down for all three times). I have undergone two cardiac catheterisations and surgery on my fingers to straighten them so I can grasp things better.

For my most recent adventure I undertook a two-year long process to be accepted by Duke University to undergo a stem cell transplant in a clinical trial. I have had hundreds of tests and surgical procedures, these include: three right and left arm ablations, MRIs, CAT scans, X-rays, barium swallows, pulmonary function tests, blood tests, urinalysis, wound care treatments and ulcer debridement on my fingers and toes, 41 hyperbaric oxygen treatments, iron infusions, chemotherapy-based medicine infusions and vitamin B12 shots. I have had a PIC line put into the artery in my neck, EKGs, ECHOs, countless hours physiotherapy and occupational therapy, and taken thousands of pills.

Through it all I have always focused on the positive parts of my life, even at times when I am at my lowest. For me my lowest was my most recent let down: I was denied acceptance into the Duke University stem cell clinical trial. Hearing the doctor say the word 'no' was probably the most devastating thing I have ever had to endure. Despite this though I just keep pushing on and try to live day to day, experiencing life in the moment and enjoying every precious day that I am given. I look back on my life so far and am amazed at how I have met so many kind and selfless medical professionals, and that I have been able to share my story with them.

I started my own personal page on Facebook to try to reach other survivors who like me are just trying to stay alive with scleroderma. As a result I have had the pleasure of hearing from lots of people from all over the world: people who like me were lost and had no idea what to do or how to move forward. People with a million questions who just want advice or a shoulder to cry on, and most of the time want to hear from a person who has been living everyday with this cruel disease and need to know that they can live a meaningful life while battling a terminal illness. I like to think I am helping them and am making their lives a little more bearable.

This past year I won a scholarship to attend the Scleroderma Foundation's National Scleroderma Patient Education Conference in New Orleans. This was hands down the best three days of my life. I was privileged to be asked to participate in a commercial that a group called The Scleroderma Patient-centered Intervention Network (SPIN) was shooting for an educational website on scleroderma that they are developing. I also volunteered to have photos taken of my hands and my makeup-free face to help the Scleroderma Foundation teach others about the disease.

Unless you are sick you don't know how normal it makes you feel to finally meet somebody who can relate to your struggles and who knows what you are going through first hand! Someone who understands what it feels like to have to have a finger amputated or to need a feeding tube because you can't swallow food anymore. If you had asked me ten years ago to take a photo without my makeup on or speak publicly about my disease on a personal level I would have given you a very hard NO, mainly because I just wasn't living in my truth. I was letting my disease control me and how I lived my life. To me now, that was unacceptable. Yes scleroderma you have changed my life in so many ways. In ways I cannot forgive, like causing me to have to quit nursing school without my degree and to resign from my job as a Medical Assistant because I was too exhausted to do all of the work that was required. You have cost me friendships, relationships, my ability to have children, family vacations, job opportunities and you have restricted where I go, with whom and when. Nevertheless, I would not change a single thing about my life. Yes it has drastically changed and I have had to learn to let go of thinking of myself as a healthy 'normal' person. I have had to teach myself how to live a life of a medically challenged person, but by no means do I think of myself as being disabled. Trust me, there are days when the bad definitely outways the good but what would be the point of wallowing in the 'what might have beens?' or in the things that I can't change? That is a waste of time, and frankly time is very precious to me. I honestly believe that you came into my life for a reason scleroderma, and day by day I am learning what this reason is.

I could not look at myself in the mirror everyday if I didn't share all of my triumphs and all of my struggles over the last 15 years with other people. I would have been so thankful to have had somebody who was willing to reach out to me, answer my questions and listen to me cry over all of the things that were happening to me, the changes my body was undergoing, and the things I was going to have to give up. So I want to do that for other people. If I make just one person feel better about themselves and their situations then to me that's a win! We cannot expect that a cure will fall into our laps, and so as long as I am able to I am going to do my part to help educate people about this disease and make scleroderma a house hold name. I will never stop fighting for my life. Yes, I am a 34 year old women living with scleroderma, but scleroderma does not and never will define me as a person. I have so many other qualities other than being terminally ill. I will get up every day living my truth and fighting to stay alive with scleroderma. I could never say I'm thankful for getting sick but I can say that getting scleroderma has opened my eyes to all of the beauty of life and how it was passing me by. I used to live my life as if I had a lifetime to live, whereas now I try to live every day to the fullest and to be present and open to all of life's experiences: the good and the bad. I may not get to live my life exactly how I envisioned it to be, but I refuse to let this disease dictate how I experience my life as long or as short as it may be.

Respectfully yours,


For more information on Scleroderma and support with living with the condition you can visit Amy's blog, or head to the Scleroderma Raynaud's UK (SRUK) website.