When Age Determines Severity of a Disease


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           About a year ago someone I know got an extremely rare disease, systemic scleroderma.  The chances of getting it are at .075%, which is the rate for adults and much less than that for children and she got it at nine years-old.  It happens to people normally from 30-50 years old and is four times more likely for women to get.  Scleroderma means "hardening of the skin" and it is where the person's skin "thickens", there fingers and toes turn blue (from a result of Raynaud's) and it is primarily an autoimmune disease where the body will- sometimes - begin to attack itself.  If it does attack the body, it will go after your lungs, kidney and heart and patients normally do not have that long to live.  Anywhere you look this disease up online it doesn't look like there are any odds in your favor. 

You're probably thinking it's extremely awkward and inappropriate I'd write about such a terrible disease someone I know has, am I right?  But, I'm not quite that simpleminded.  My family and I found out (just today actually) that the Internet forgot to mention something huge about this disease that has been a reoccurring phenomenon; the major differences in the effects of scleroderma for children versus adults. 

Unless you do some intensive research on this disease, you are not bound to find much on what it's like in children because there have been so few cases of it.  But, fortunately, the 

kidsodds are much more favorable and apparently if you're going to get this disease, the best time to get it is at a young age.  We visited a specialist today at UPMC's children's hospital in Pittsburgh who deals specifically with this disease.  She gets referrals for everyone in the country  (my family here are from Massachusetts and here solely for this reason) and she said she has only seen maybe fifteen children now for scleroderma; even with being the referred specialist.  (Oh, and I can't forget to mention she is a Penn State Alumni!)  But anyway, compared to adults, she has never seen any of the kids come out with the effects that adults have.  She has never seen a case where it affected children's internal organs and usually they only have the Raynaud's effect and maybe some hardening of skin.  Dr. Medgzer, the adult scleroderma specialist at Pittsburgh's UPMC hospital, stated that "if the patient gets through two years with the disease without any malfunction of the organs, it's basically impossible for it to ever happen".  Good to find out, right?

My sister has had this disease now for a year and with all the worries from what the disease "usually consists of", we found out today for the first time, that it's basically impossible for any of these bad things to happen to her since she got it at such a young age and has had it for a year already.  Guess people just forgot to mention this along the way the past year.  Overall, it doesn't affect her on a day-to-day basis and nothing will ever come of it.

Pretty crazy how a disease will take a toll on the body so differently depending on how old you are, don't you think? Now knowing the little effects this disease normally has on kids, here is a website on this disease- but with most regards to adults.


(Picture from this website)

2 Comments

I cannot imagine how scary this must have been but I am very glad to know that it all seems to be turning out okay! I find it very odd that the impact of this disease is actually worse in adults than children -- you would think that since children are smaller and their internal organs are less developed, they would be more susceptible to having the severe effects take over and shut down their body. I wondered what other diseases are actually worse in adults, and found that a very common disease fits this criteria: chickenpox. We've all either had chickenpox or had the vaccine, but before the vaccine was created, everyone got chickenpox. Children and adults alike. According to this article on the subject, it explains just how the disease is worse in adults. I hope everything stays good for your family and that this scary disease remains mild!

Thanks! Yeah, if we weren't for sure everything will be going good I wouldn't have wrote about it haha. But, the chickenpox thing is actually really cool too and I never knew that! I've also never had chickenpox, so I'm definitely going to read up on that! The only plus side to not having the chickenpox is probably that I can't get shingles! Here's another link to shingles if you're not sure to what it is (I only know because my friend had it). But, you can only get it if you've had the chickenpox, so I guess it has its advantages and disadvantages! http://www.ninds.nih.gov/disorders/shingles/shingles.htm

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