The story of Monika
Hi, I’m Celebrity Chef Monika Hilton and 5 years ago, I was diagnosed with an autoimmune disease called Scleroderma meaning (hardening of the skin) It’s a connective tissue disorder that also causes chronic pain, skin tightening, joint stiffness, fatigue, intestinal complications and potentially organs failure.
The recent passing of the Iconic Comedian/Actor Bob Sagot has sparked conversations about the charity that was near and dear to his heart, SRF (Scleroderma Research Foundation – Scleroderma.org) his sister, Gay Sagot died from an aggressive form of Systemic Scleroderma in 1994, she was only 47 years old.
Scleroderma has caused deformities in my hands/fingers my arms and serverly limited my mobility. I cannot be in direct sunlight & I’m highly sensitive to extreme hot and cold temperatures. My skin on several parts of my body is shades darker than my face resembling Vitiligo. I wear splints on my teeth because the connective tissues in my mouth are deteriorating causing several teeth to be loose making it very difficult to eat. My dental hygiene is also suffering because i can’t open my mouth more than the width of my thumb therefore, flossing is impossible and brushing is a challenge.
I never heard of this disease until I was diagnosed 5 years ago and since then, ive been researching as much as I can.
It has changed my life physically and mentally.
I was a competitive Chef and cake artist (www.TheMoExperience.org) once competing on Food Network’s Cake Wars and Netflix’s Sugar Rush, with a huge clientele in the southeast area as well as the entertainment industry and I can no longer cook/bake nor decorate cakes due to the loss of mobility in my hands and not being able to lift, bend, or stand for extended periods of time.
I need assistance bathing, dressing and sometimes eating. My joints and skin on my hands are so tight I cannot make a fist, button a shirt, open a door and I can barely drive my car.
I am seeking the help from a specialist that can help me improve my quality of life, better yet, a Cure for this mean ole disease.
I’m prescribed so much medication, I often get full off the water from taking 27 pills & often times I skip meals which has caused me to be boarderline under weight.
I’ve read quite a bit about holistic healing and even practiced some of their methods like a plant based diet, using more herbs, essential oils, alkaline water intake and vitamins. Many vitamins are too large for me to swallow due to my tight esophagus and they are very costly. I attend Physical Therapy 3 times a week and occupational therapy daily.
I’m already over my head in Drs bills but I will do what ever I can to get back to a healthier life.
It still seems to be very little progress in finding a cure for Scleroderma. In my own treatments, my Drs are only medicating my various symptoms but nothing has really changed my quality of life. Please help me spread awareness about this disease and solicit more advocates to get more involved to raise more awareness and money to donate towards a cure for Scleroderma.
I know God is a healer and I am in constant prayer for myself and the other 300,000 plus people this disease is affecting.
I’ve began to speak out about my journey with Scleroderma and I’m asking you to please help me. There is no cure for Scleroderma but early detection can slow down its progression. Often times the symptoms mimic other autoimmune diseases with muscle or nerve pain, joint stiftness and fatigue but nothing conpares to this skin tightening that I am experiencing.
Thank you for your time and consideration. Blessings to you.
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Monika R. Hilton