LETTER: Hard Word. Harder Disease

FI-Letter-to-the-EditorJune is Scleroderma Awareness Month and June 29 is World Scleroderma Day.

To the Editor:

Ever stop to think about what it would be like to walk in another’s shoes? Imagine living the life of someone famous, with money to burn; someone that seems to have it all? It’s our nature to think that if we could be someone else, things would be better. The grass is always greener.

Working with people living with a chronic disease however, can soon put things into perspective. We all go through illness and pain, and most of the time it is acute, temporary and can be resolved in a relatively short amount of time with the help of the right medicine, rest, or just waiting it out. It is so different for those with chronic illness like scleroderma. This life-altering autoimmune disease is an equal opportunity illness – it knows no preference for race, ethnicity, sex or age. It can be mild or severe in nature and, in most cases, it causes an overwhelming and debilitating fatigue. It can be unrelenting. It causes changes in relationships that can lead to isolation. Many patients can no longer work. There is no known cause and the cure remains elusive.

Daily life is full of challenges. Many are unable to leave the house before late morning. Each step on feet that have lost padding is painful. Digestive issues necessitate special diets and frequent bathroom breaks. Things we take for granted – being able to brush teeth and hair and dressing are so difficult for those that have lost hand function due to contractures and amputations. Many experience skin tightening of the face making it hard to take care of teeth that can’t be reached because the mouth won’t open wide enough. Physical issues including fatigue, achiness, fibrosis, hypertension and hardened vessels make being active difficult at best. 95% of scleroderma patients can’t tolerate the market’s frozen food section without layers of clothing and gloves, even in the summer! Sure, we all have issues that may overwhelm us at times, but speak to a scleroderma patient or their loved ones and you are jolted back to the reality that our issues are small and temporary. Even when daily stress gets overwhelming, we can lay down and sleep without chronic pain, heartburn or reflux that make getting a good night’s rest a thing of the past.

June is scleroderma awareness month. It is estimated there are 30,000 people with scleroderma in NY, northern NJ and CT; 300,000 in the US and more than 2.5 million world-wide. We need your help to raise awareness and advocate for those that live with the daily challenges of this disease. Please visit: www.SclerodermaAware.org and pledge to help spread the word. We take so much for granted – image if you could never independently open a bottle of water, swallow food without choking, move without pain sleep through the night without the unbearable sensation of tight, itchy skin.

Grandpa always said if you have your health, you have everything. I see now how true that statement really is!

Mary Beth Bobik-Kadylak

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