My life with scleroderma.
I was diagnosed with scleroderma in 1992 but had symptoms for about two years before that. My skin had been feeling tighter than normal and I was incredibly itchy. I was referred to a dermatologist who diagnosed me after a simple blood test. Finally, my symptoms made sense. The tight skin, itchiness, fatigue, sore joints, Raynaud’s and depression, all of course part of scleroderma, but on their own I felt maybe I was just feeling sorry for myself! I just had never put the symptoms together. The biggest mistake I made was to go to the library and research scleroderma, an illness I had never heard of. The encyclopedia diagnosis suggested I had about 5 years to live. I was so angry that I got this disease when I was only 40 years old and at a point in my life where my son was in high school, I had a great job and we were enjoying doing things as a family. I managed to work for another year and then had to take a disability pension. I spent the next two years very depressed and spent a lot of time in bed.
My name is Lihong Yang, I live in Richmond B.C. and this is the story of my journey with hematopoietic (hee-MA-toh-poy-EH-tik) stem cell transplant (HSCT, for short) to treat my scleroderma. Hematopoietic stem cells are immature cells found in your body’s blood and bone marrow. These cells can develop into all types of blood cells including white blood cells, red blood cells and platelets.
In March of 2019, I was diagnosed with systemic diffuse scleroderma. Questions I asked myself were: How do I face my uncertain future? How long can I live? When will be the time to say goodbye to my family and friends, and the job I love? I remember feeling broken down at that time, both emotionally and physically. My life became overrun by this disease.
In the winter of 2015, everything in my life changed after my diagnosis of systemic diffuse scleroderma. I spent the next several weeks paralyzed by fear trying to process all the information I was given by my doctors. I wondered how the trajectory of this disease would unfold for me and my family. Little did I know I was about to enter the fight of my life.
Rewinding the clock, I was a competitive athlete holding provincial records in cross-country running, skiing, and cycling. I spent a lot of time in my 30s and 40s participating in half and full marathons. I also enjoyed triathlons and teaching fitness classes. I worked for 25 years in the social service field serving and supporting adults with developmental disabilities. I was passionate about my volunteer projects in the community and always had positive goals in my back pocket.
I would like to tell you all a little bit about the story of my Scleroderma journey and diagnosis. I was diagnosed 9 years ago after a few years of questioning and trying to figure out what was happening. In 2009 I was living my typical active life doing all the outdoor activities, sports and coaching that I loved to do. Then out of nowhere my symptoms started with just some unexplained muscle and joint pain, fingers and toes going white and being out of breath.
After several years of going to specialist’s appointments and trying to self- diagnose and heal myself with physiotherapy, chiropractors, acupuncture and much more, I started to think as if everything I was experiencing was all in my head. No one could physically see the pain I was in because it was all inside my body which was very difficult to explain. Finally, in 2011 after only a simple blood test I was diagnosed with Scleroderma. This blood test proved that I had an overlap of syndromes which was characterized as a mixed connective tissue disorder.
My journey with Scleroderma began in the early 2000’s with several random and seemingly unconnected symptoms. I am a teacher and have alway been active – skiing, hiking, dance, camping, yoga, curling, all of which fit well with my lifestyle in Squamish. Around that time I did a big renovation on my house, and I also switched birth control pills. In hindsight I have come to believe that either or both of these factors were triggers for whatever monster was lurking in my body.
Every day I’m reminded that I have Raynaud’s, Scleroderma, rheumatoid arthritis, Sjogren’s and interstitial lung disease . These diseases have given me a wakeup call. I have become a better person through this experience and realize just how fragile life is.
I’m not one to sit back and let things happen so, when I was diagnosed, I took charge. This disease was not going to consume my life or control me. My husband, David, and I sat down to discuss the future and agreed to starting on our “bucket list” rather than waiting until retirement. At the top of our list was to experience cycle touring the world on our tandem bicycle. Though I had lost strength and dexterity in my hands, I still possessed the strength in my legs and the determination in my heart to fully enjoy the cycling and adventure. Since making the decision, we have taken trips ranging from six to 15 weeks; experiencing the sites, history and people of Australia, Ireland, France, Denmark, Germany, Austria and locally. We do not intend to stop any time soon.
We’ll see what the future brings. Worst case scenario, David has agreed to put a motor on the tandem!!!!!
We all need to keep healthy and participate in life. That I am still able to ride our tandem and see the world, while getting in the ever-important exercise for my overall health, is demonstrating my control over my destiny.
Every day I am so thankful for my husband David’s love and support; and the support of family, friends and my medical support team (rheumatologist, gastroenterologist, family doctor, chiropractor, massage therapist, physical trainer, physiotherapist, and podiatrist).
This is the story of the progression of my health problems.
I spent a few years being angry with my body, grieving the future I had dreamed for myself, and feeling isolated, even when I was surrounded by people who loved me but could never truly grasp the degree to which my life was changing. It happened so quickly. I went from developing a pre-professional dance career to having limited capacity for sustained movement within a few weeks.
With a history of joint issues, I was easily misdiagnosed and treated for rheumatoid arthritis. The prescription cocktails I had tried, however, were not preventing the skin on my hands, arms, chest, and face from tightening. The chronic fatigue and pain were beyond any physical discomfort I had ever experienced before. After a few years of struggling to develop an effective treatment plan, I was accurately diagnosed with scleroderma and learned that the symptoms I had been experiencing in my extremities were typical of Raynaud’s Syndrome. However, it would still be a few years before finding health care professionals willing to work with me and for me.
Sadly we lost Nicole on September 8th 2021, but she continues to shine brightly in our lives with her everlasting gift of music. For those wishing to keep enjoying Nicole’s music, please visit nicoleedwardsmisic.com and share her music with your family and friends as it was Nicole’s wish her music remain accessible to all.
I was diagnosed with systemic scleroderma in 2001 at age 31. I have some early interstitial involvement in my lungs that became stable after a few years. My GERD symptoms are manageable. Chronic fatigue has been a big challenge and an on-going balancing act. Raynaud’s was my first diagnosis, in 1999 and can be very limiting. The amount of pain in my life was reduced dramatically when I started using laser therapy (theralase.com) to heal problematic finger ulcers. I also love my re-chargeable battery-operated heated jacket and gloves. Chemical sensitivities and food sensitivities appeared and at some point. Hashimoto’s thyroiditis and Sjogren’s were added to the list.
In the fall of 1998 at the age of 25 and newly married, I delivered our first baby, a healthy beautiful girl. Not long after her birth, I noticed my hands would swell when out walking or exercising and occasionally turn blue. I was concerned so I went to the doctor and received my initial diagnosis – Raynaud’s phenomenon.
I was told that Raynaud’s was not uncommon, which I found interesting but not too worrisome. A couple of years later, while on vacation in Mexico, I noticed that the nice dark tan I usually get included a shiny tightness on my chest that I had never seen before. As soon as we returned home I went to my family doctor who took one look at me and immediately referred me to a rheumatologist, who gave me the scary diagnosis of diffuse scleroderma.