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Why My Rare Disease Shouldn't Be Compared to Cancer

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At only 18 years of age, I have experienced tremendous loss in my life. A large percentage of this loss has been due to cancer — many of them being children. My mother, who is my ultimate hero and inspiration in this life, is a cancer survivor, as well as my grandmother, who is also my hero. Cancer has affected my life in more ways than one, and the amount of hatred I hold for that beast in my heart is immense and raging.

When someone has cancer, just like most other serious chronic or life-threatening illnesses, there are often side effects that can potentially be dangerous. Whether it is caused by the disease itself or the toxic medications used to destroy it, many other parts of the body can begin to deteriorate.

When the body’s immune system is so depleted from treatments and it can no longer protect itself or fight off other illnesses, a small kidney infection or a common cold can be fatal. If a cancer patient were to have this happen, the cause of death would be noted as “cancer.” Why is this not the case when those who suffer from rare illnesses or diseases pass away due to something the illness or treatment caused?

I live with complex regional pain syndrome (CRPS), which is a rare illness of the nervous system that causes excruciating pain ranked higher than that of childbirth, amputation and even cancer pain. According to medics, it is considered the “world’s most painful disease,” ranking a 46/50 on the McGill Pain Scale. CRPS is extremely rare, and is often unheard of amongst the average population. Because of the lack of awareness, even amongst doctors, it often goes undiagnosed.

CRPS can be life-threatening in many cases, being that it is a gateway illness to other diseases, such as dysautonomia, autoimmune illnesses, and more. These illnesses, caused by CRPS, can cause fatal symptoms. Why is it that when a CRPS patient passes away from a symptom that exacerbated into something fatal, or an illness caused by CRPS, the cause of death is not noted as “CRPS,” but as the symptom or incident itself?

When I was first diagnosed, I was told over and over again by people who were unaware of the true effects of my illness, “At least it’s not cancer.” While yes, cancer is awful and has robbed too many lives of those I loved, my illness is just as valid and worthy of the same level of awareness, understanding and attention. Just because it is rare does not mean that it is unimportant, or that its toll is not as detrimental. All illnesses are valid and should be treated as such.

The world of illness and disease should not have to be a competition of “who has it worse.” Every illness, common and rare, is worthy of the same attention, awareness, research and deserves action. So while you may have never heard of my disease, do not doubt its magnitude. The truth is, anyone living with a disease is facing adversity, and we should all be recognized for our raging courage and strength, even if we don’t always feel strong.

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Originally published: January 25, 2018
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