Raised: $820.00 Goal: $1,000.00

I was diagnosed with an autoimmune disease called Clinically Amyopathic Dermatomyositis (CADM) in August 2020 at the age of 28. CADM is a rare disease and is diagnosed in approximately 2 in every 1,000,000 people. There is currently no cure, no medication specific to the disease to treat it and doctors do not know how it is triggered; they have assumptions, but nothing concrete to guide them in determining a cause. It can be difficult to diagnosis, especially if there is no skin involvement. I was “lucky” that I had the typical skin findings of DM/CADM which made it easier to diagnosis, but many do not receive such a quick diagnosis, prolonging their suffering and severely reducing their quality of life. I am fundraising to raise more awareness of this disease as it is relatively unknown (even those in the medical community have asked me what CADM is when I have visited emerge and disclosed the autoimmune disease I have) and to raise funds towards more and better research to find a cure and to find out more about how this disease is caused.

My symptoms included:
– Rashes on my chest, my face, my eyelids, my scalp, my knuckles (Gottron’s papules), back of my neck and hips (holster rash).
– Hair loss.
– Ragged cuticles and prominent blood vessels on the nail folds.
– Fatigue.
– Muscle pain and stiffness to the point that I couldn’t do very normal stretches I have done my entire life.

The tests I’ve had to go through during my diagnosis and continue to have to go through every year:
– 14 blood tests during diagnosis, monthly blood tests for the first year and blood tests every 3 months after that.
– Skin biopsy from my hip and neck requiring stitches during diagnosis.
– Full CT scan to check for cancer.
– Chest x-ray to check for lung disease.
– Colonoscopy to check for cancer/celiac disease.
– Endoscopy.
– Numerous eye tests to ensure the medication I’m taking isn’t causing blindness.
– Echocardiograms.
– Holter monitor for 3 days.
– Pulmonary Function Tests.
– I have a team of 6 doctors – Rheumatologist, Dermatologist, Cardiologist, Pulmonologist, Gastroenterologist, Ophthalmologist.

The unknowns of how this disease could progress is debilitating; it has the ability to effect many parts of your body. Cancer, lung disease, loss of muscle function in your neck, arms, legs etc., difficulty swallowing, cardiovascular disease, development of other connective tissues diseases, development of other autoimmune diseases etc. are all possible with this disease. Not knowing if the disease will progress to any of this and not knowing when it could, is something that is extremely challenging to learn to live with. The fatigue can be debilitating at times. The aches, pains and malaise is difficult to live with. Not enjoying the sun as much as I used to because it triggers rashes, fatigue and malaise if I’m not careful is difficult to live with.

I am fundraising for me and for many others who need a cure, who deserve to have more answers than just unknowns, and who want a better quality of life. Please consider donating to help us find the answers, or help raise awareness in lieu of donating.

Thank you, in advance, from the bottom of my heart.

Kaitlin

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