Sanique's #MySclerodermaStory

This journey begins in 2007, when I became pregnant with my beautiful daughter, experiencing what is typically considered a life blessing, only I didn't know what the road ahead would entitle.

Months after her birth, I began to develop signs that something was wrong.

Starting with marks on my body that I thought were stretch marks, then later developing pain. No doctor knew what it was, they just assumed it just was an allergic reaction, but they were all unsure of to what. They kept prescribing me ointments but nothing would work, and the pain felt just unbearable.

I may have given up, however I took a trip to Jamaica to visit family. When they saw my skin with all of the dark brown marks on my body, they knew something wasn’t right. They sent me to a dermatologist in Kingston, Jamaica, who took a biopsy of my skin to see what was happening. The biopsy results confirmed that I had Scleroderma, a word that I would never forget. There was no cure, I was informed, and that will always haunt me for the rest of my life. That was November 2008.

My life has changed and never been the same since.

When I returned from Jamaica I visited a dermatologist, who then led me to see Dr. Janet Pope, a woman who will forever be the reason my life has

changed for the better. She took me on as a patient and continued to work with me. She said I currently had Morphia, which is one of the 3 components of Scleroderma, and that I was lucky only my skin was affected. She advised me that within 10 years it should go away. I thought that was it but it wasn’t.

For 2 years I was in excruciating pain. The skin felt like extreme heat radiating from it. I was experiencing excruciating pain while trying to raise a baby. “This is my life?” I thought, “is this what it’s going to be, just pain and then death?” I couldn’t bear it.

Thankfully I was able to go on prednisone and was able to stop feeling the excruciating pain as intensely. I was able to return to school and start a career.

With being diagnosed you can say “Just give up, this is life, there is no cure, just go with the pain and die”. But I didn’t want that to be my life story, I wanted so much more. I was able to have a raise a child, I was able to work, I was able to find love. I was able to know that Scleroderma is not my entire life, but only a chapter in my book of many more chapters to be written. Scleroderma has taken my kidneys, my lungs, my heart and my fingers but it has not taken my joy.

Throughout that, I continued to feel a lot of pain and many issues kept coming up. In 2010 I was diagnosed with Crohn’s, then esophagus problems and frequent severe heartburn. Fingers started to show signs of Raynaud’s and constantly cold.

2013 was the year my life changed for the worse and also for the better.

I started to get really sick, my body was so weak I could barely move, leaving me unsure of what was happening.

Despite seeing doctors, none could really determine what was happening. I was finally admitted to the hospital where I learned that my blood pressure was extremely high and my kidneys were in poor condition. They put me on high blood pressure pills and I thought that was it.

It became worse in November however. I was admitted to the hospital with kidney failure, lung hemorrhaging and heart problems. They said my heart was not moving. I was admitted to Intensive Care Unit and was told I would never come back out. But by the grace of God, I survived.

Throughout all of this I had to receive blood transfusions and high doses of Prednisone to stop all that was happening in my body. I was in the hospital for one month and had to learn how to walk again because my body had grown so weak from just sitting in the bed.

One thing that made me push through was my beautiful daughter Cienna whom I knew I had to fight through for, to be able to see her live. I bargained with God to be able to “have just one more day”, then “I just want to make it to her 18th birthday, just make me make it to her 18th“. She is now 15 and I’m almost there.

There is nothing worse as a mother who has to constantly look at her daughter and know one day she has to bury me and it could be sooner than she and I imagine. It's hard being in the hospital bed recording goodbye messages to her knowing this may be the last time she sees this. I hope that day never comes.

I wouldn't have gotten through this without two women in my life. Firstly my mother, Sylvia who never lost her faith and kept praying and taking care of me.

Secondly, Dr. Janet Pope, my guardian angel. She has been my rheumatologist since 2009. Most doctors would have given up on me but she was always there throughout my journey. When I said I was in pain she listened. When something was happening to my body she would ensure I received tests to see what was happening. If it was beyond her expertise she would send me to the right doctor. Even when I moved to Toronto, doctors would call her for advice and she would help. Anyone who has Scleroderma would be so fortunate to have her as a physician.

I am forever grateful.