Kelly Kohls

My Life with Scleroderma

It was just under a year since I had gotten married to my high school sweetheart and love of my life, 22 years old and a newlywed so happy, young and healthy. I would have never imagined what was about to unfold within the next several years of my life.

It was March 2003 and I started having pain in my hands and feet. Sometimes the pain in my feet was so excruciating that I couldn’t even walk. I had made several visits to my then Primary Care Physician with my concerns. At the time he took a full blood panel and minor tests along with an exam and his conclusion with no compassion what so ever, was nothing …I was simply making it all up. Trying to plede with a doctor to convince them that you know something is wrong just didn’t seem right to me, I needed to move on. After several more painful weeks had passed my husband had gotten a suggestion from his wonderfully caring employer for me to make an appointment with her family doctor who she trusted and was confident would be able to help me.

I visited the suggested doctor who I still see today as my primary physician, she was wonderful. Right off the bat she was almost certain what was wrong and referred me to a rheumatologist in the area. Dr. Kurt Oelke is who I met with and he has been with me through it all since the first day of my diagnosis. I could not have asked more a more caring and compassionate doctor.

At the time I was diagnosed with Rheumatoid Arthritis due to the horrible pain I had been having in my joints. I honestly don’t think it hit this 23 year old what that really meant. I knew it was serious but I figured we’ll control it with medication and it will be no big deal.
Things were going ok. I was given several different medications, pills, at home injections and steroids but nothing seem to really truly make me feel better. About a year later I then started developing skin tightening and Raynaud’s disease. Raynauds disease is a condition resulting in a particular series of discolorations of the fingers and/or the toes after exposure to changes in temperature or emotional events. Skin discoloration occurs because an abnormal spasm of the blood vessels causes a diminished blood supply to the local tissues. This can be a painful condition that can also lead to various skin problems due to the amount of time there is diminished blood flow in the extremities.

It was then at 24 years old I was diagnosed with Scleroderma. I had never heard of this… no one I knew had. I immediately started researching the disease but as much knowledge as I could muster I still don’t think the seriousness of the disease had set into my young mind. My mom knew different, she was devastated that her “baby” was sick with this disease and she couldn’t change it. She never let me go it alone. She was there every step of the way, every appointment, every test, scan, injection. She, besides my husband was my biggest support system through everything. My mother, my best friend suddenly passed away of a cerebral aneurysm at the age of 51 a year and a half later and I deal with the grief of her loss and getting through this with out her everyday.

Shortly after she had passed my methotrexate injections had been working well. I was feeling good despite the little changes I saw. The tightening on my hands and face, the increased acid reflux disease and increased Raynaud’s disease when I went out in the bitter Wisconsin cold. The important thing was though, I was stable.

In November 2007 like any normal, married 27 year old women I too had hopes and dreams of having a family and becoming a mommy. After much careful discussion with all my specialists we decided since the Scleroderma had been stable it was ok for me to discontinue my medication for one year to try to conceive. Ecstatic and eager but with caution and uncertainty we proceeded with our journey to become parents!! Several months passed and we hadn’t any luck and by this time my body was starting to change again. I had an extreme lack of energy, shortness of breath, hair loss, chills, weight loss, insomnia and disturbing restless legs. Completely heartbroken, we decided it was time to give up on babies for now and try to get me better. After much testing we concluded that Scleroderma had affected my ability to produce enough red blood cells vital to my health. I was extremely anemic with Anemia from Chronic Disease. My iron levels and red blood cell counts had dropped to dangerous levels and it was imperative that we them up, I started getting 4 hour IV Iron Infusions in February 2009 and in May 2009 I started receiving sporadic Blood Transfusions. Without the infusions my blood counts could be fatal; I have been going in for them about every 4-6 weeks and have been slowly feeling better.

Unfortunately anemia is not the only thing I have endured since that time. My skin has changed rapidly… my fingers started to bend and cripple more and the pain that comes along with it sometimes seems to be unbearable, my arms are also not able to extend fully like they used to. The tightening as well as some hyper pigmentation has affected my face, neck, elbows, chest, back, legs and feet. The physical changes have been very emotional. Watching myself change from this disease sometimes makes me feel like a shadow of what I once was. During a recent routine CT Lung scan I was told Scleroderma has also now developed in my lungs and I am in the early stages of Lung Disease.

It has been very physical as well as emotionally exhausting for my wonderful, supportive husband, Mike and I and although there is no cure for Scleroderma I am currently on the best medications that there is to offer. Even though sometimes it’s tough, I stay as active as I can with normal daily tasks and working a full time job everyday. I have been lucky enough to recently become a patient at Northwestern University Hospital where Rheumatologists practice and research for people like me all day, every day!

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease classified as one of the autoimmune rheumatic disease and it affects an estimated 300,000 people in the United States. It is a devastating disease that affects the skin, joints and internal organs. Never in my life plan did I ever think at the age of 29 I would start to lose my independence, my ability to put my own socks and shoes on, bend over to pick something up, hold things in my hand, get things out of the high cupboard, the embarrassment of dropping something on the floor at the store when I am alone, spend time outside, sit on the floor, and have a family of my own.

As of right now there is no cure for Scleroderma but doctors are researching hard everyday to find a cure for this debilitating disease that affects so many of us but just isn’t talked about enough. Through my story I hope to raise your awareness of the disease and hope that you can make a difference in the quality of life for me and so many others like me who need your help.