My best friend is my sister. Growing up, my parents worked different shifts so that someone could always be home with us. Most nights, while my mom was at work, my dad would be asleep on the couch. I essentially “raised†my sister. I made her dinner, gave her a bath, and read a book to her before bed. We share this incredible bond that has carried us through our childhood and remains strong as adults.  But my story is pretty common amongst first generation Americans.
As close as I am to my sister, this story is about Candace Ruiz and Cathie Sookdeo. These sisters will forever share an amazing story of discovery.
Cathie is a scientist who happened to be attending a seminar at Genzyme, where she works. That seminar was the link that pieced together a list of peculiar symptoms and what would eventually lead to a diagnosis for her sister. Cathie lives in Massachusetts while Candace lives in Colorado. Through conversation, Cathie had recalled her sister describing her raynauds, reflux, and the fact that she was always cold.  Nothing too concerning.
The seminar was presented by a physician who treated scleroderma patients. During the introduction, the physician gave a brief overview of what scleroderma was. As the physician listed the common symptoms, Cathie’s stomach dropped as it all sounded too familiar. The presenter listed raynauds, reflux, and skin tightening. Cathie immediately knew what was wrong with her sister. As soon as the seminar concluded, Cathie raced back to her office to call her sister.
At first Candace didn’t answer. When Cathie finally got a hold of her sister, she immediately said, “Candace, I think I know what you have.â€Â Candace’s next words were, “Is it scleroderma?â€
Candace and her sister, Cathie
Candace had been doing a little of her own research on the internet trying to understand what all of her symptoms could mean. Through everything she had learned, she had narrowed it down to scleroderma. But, it was not until she heard from her sister, that she knew she had to get it confirmed.
Meanwhile, Cathie asked around at Genzyme and eventually found a rheumatologist in Denver for her sister. In fact, Cathie flew out to Denver to attend one of the Candace’s early appointments following a confirmed diagnosis of scleroderma.
That was about 10 years ago. Today, Candace is managing her symptoms and living a busy life. Candace enjoys playing cello, yoga, and daily walks. She will be starting a new job as a Business Professor, while finishing up her doctorate degree. Candace also has several trips planned. Certainly, living with scleroderma is not going to hold her back!
Candace is my patient partner as I embark on running the 2014 Boston Marathon as a member of the Genzyme Running Team. I am extremely honored and humbled to be partnered with someone who lives each day with ambition, passion, and grace. We recently chatted on Skype as she lives in Denver and I am in Boston. Even though we were miles apart, it felt as if she was sitting next to me. We talked about what we like to do, our families, and the fact that our football teams were in the Superbowl (I grew up in Seattle).
I hope to make you proud, Candace!
Scleroderma falls under the umbrella of rare diseases. It is estimated that about 300,000 Americans have scleroderma. Currently, there is no cure for scleroderma.
To learn more about scleroderma, please visit: www.scleroderma.org
Candace and Rena meeting on Skype
What we plan with thoughts and actions for our future so we can enjoy retirement/older age, right? Life can change drastically when a rare, incurable disease such as Systemic Scleroderma attacks our bodies without warning! My life started changing in Fall 07 in my hands, progressing fast to include weak/painful muscles, swelling, loss of range of motion and depression until 3/30/09 diagnosed with Systemic Diffuse Scleroderma which no one has ever heard of until diagnosed and adding insult to injury, neither have most doctors, leaving patients to fend for themselves on how to find treatment for symptoms because Scleroderma cannot be treated as yet. Most Scleroderma patients look normal in appearance but the damage is extensive on the inside of our bodies, stage 4 kidney disease, hiatal hernia, pulmonary fibrosis, aneurysm in heart, GI issues, skin changes and Raynaud’s in hands & feet are just a few of my Scleroderma challenges. I am one of the more functionable patients and grateful I have doctors who care and support from Sweetheart, family and friends. Some patients don’t have either doctors nor support and rely on facebook Scleroderma chat groups for advice, love and support from people who relate and understand what they are experiencing. My life has changed dramatically from 5 1/2 yrs ago and I am grateful for my Scleroderma journey because the more I reach out to others the more rewarding my life has become. I am a patient advocate helping to educate and promote public and medical awareness of the desperate need to recognise Scleroderma as the life threatening disease it is. Scleroderma was first documented 260 yrs. ago, now we want awareness to help alleviate the horrible suffering this disease causes physically, mentally and emotionally. Please help. EMILL:kingsleymary37@gmail.com