Rare Disease Report
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Physicians
Patients & Caregivers

Adulthood with a Rare Disease

JANUARY 04, 2016

There are countless sayings that we hear as we go through life. At this point in my life, I keep coming back to one particular phrase: “There is a first time for everything.” For the first time in my adult years, I have to make the tough decision of whether or not to undergo surgery. In years past, these difficult decisions fell upon my parents’ shoulders as they dealt my rare condition (Mucopolysaccharidosis VI). I often times feel saddened that I have had to put them in those difficult circumstances. Don’t get me wrong—my parents didn’t leave me out of the surgery conversations. They gave me an age appropriate amount of information as each one came along. As a child and teen, I trusted that my parents always had my best interest at heart and that they would ultimately choose what they felt most comfortable with (if you can ever feel totally comfortable with a decision like that).

But, this time the final choice rests solely on my shoulders. I don’t make decisions like this without having a discussion with my parents, others who have been in the same situation, and medical professionals. Taking all that in and processing it all can be overwhelming, but at the same time, incredibly beneficial. Each group of individuals comes from different backgrounds and points of views that can assist in sorting out thoughts.
 
The fact is that surgery has its risks for everyone, but when the person has a rare disease or health condition, the complications and risks increase tremendously. Even what some people might think is a “simple procedure” can be chancy. I have recently realized that for myself.  Life certainly stays interesting for individuals dealing with a rare disease.

One element that doesn’t change in adulthood is the feeling of misery that comes when parents have to watch their child be rolled away down a hospital hallway.  Those feelings will remain no matter the age of the child. Saying goodbye as they try to stay strong for you, but knowing that in their mind they are thinking, “Will this be the last time I see my child’s smile?” At the same time, you may try to combat their fears by staying in good spirits with a smile so your parents won’t worry about the next time they see you.

This is just a glimpse of the difficulty that comes with a rare disease or health condition in adulthood. There are numerous positives that come too.  That is why I always try to make the best lemonade possible as my life presses on here on Earth. None of us know when our time will come to join God, but until then, keep doing your thing and stay positive!

 





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