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 FABRY'S
DISEASE: IN THE FAMILY'S OWN WORDS
Kevin Nevrivy and his father, Joe Nevrivy Jr., of rural Ord recently
pondered the effects on their family of Fabry's Disease, a genetic disorder
that has afflicted three of Joe Nevrivy's six children. Here are excerpts
of their thoughts.
Kevin Nevrivy's comments:
Excruciating pain in all your muscles and joints, fatigue, red spots
on certain parts of your body. Gets worse with weather changes or even
when there is moisture on the ground, such as snow or after a rain.
When the humidity rises it's real bad and also temperature changes,
as for example too hot or too cold. Temperature of around 65 degrees
is the best with the humidity down low.
Individual complaints of us three are somewhat different
with the same symptoms above. Kevin occasionally runs a fever. Frank
complains of morning nauseousness. Bryon has persistent diarrhea yearly.
Also causing all of us deep depression.
I cannot withstand any of these things mentioned
below - can't tolerate direct sunlight. If too hot or if too cold, any
high humidity, any kind of drafts. During and after a rain storm. Same
with a snow storm, when the snow is still on the ground. Any kind of
moisture. Or excessive walking. Standing. Sitting. Lifting over 30 lbs.
Our mother died at early age of 52, her having a
heart attack first and then having a fatal stroke in the end. This might
have a bearing on our situation but this is not for sure. Only a suspicion
that her complications compare with what we read in articles on this
disease and her untimely death. It's a mystery for us boys on how and
why we got this disease.
By using these four pages of truthful and honest
information and putting it in print just might help someone out there
in need of this kind of information. I sure do hope I have done some
good.
Joe Nevrivy Jr.'s comments:
Kevin and Bryon are both in a very serious condition on account of
this disease and are positively unable to work on any kind of job ...
This gives them no choice but to be totally dependent on their father
for full support and living in his home with him.
Frank has a little milder symptoms of the disease
and is able to hold a lighter kind of job and be on his own. But with
great difficulty trying to exist and progress normally.
Don't know how long this will last as the symptoms
of this disease get worse in time and in getting older does not help
matters at all.
This Fabry Disease hit all three of my sons, male
members of my family of 6, leaving no hint of any symptoms of the disease
in my three daughters - male members hit and females spared.
I have six grandchildren - three boys and three girls
- ranging in age from 1 to 14. They all seem to be all right with no
apparent signs of the disease as of yet. Just maybe it's phasing out,
hopefully dying out completely in time.
But as I understand this disease, it differs from
one generation to the next. Hitting the females in the next generation,
maybe?
You just can't come to realize or imagine what it's
like for a father to watch all of his sons suffer from this excruciating
pain and other connected symptoms that cause great suffering and all
caused by this dreadful Fabry Disease and you are completely helpless
to do anything about it in any way.
This not only being stressful and worrisome on a
father, but above all it's so downright heartbreaking and costly, with
no results.
Adding to an already aggravated and anguished father
is what I read in an article on this terrible Fabry's Disease and grieved
me even more. It states the fact that people who have this disease have
a short life expectancy - deathrate on an average is 41 and is very
common without any medication.
How can my three sons even think or dream of having
any kind of a future whatsoever?
People often ask, "How in the world are you able
to deal and cope with this kind of catastrophe?" My answer is, "It's
not easy at all ... but you have to learn how to keep a stiff upper
lip and then try to live day to day only and do a lot of praying and
hoping for the best. Try not thinking of the past and always look for
a brighter future that just might be possible with help and a cure just
around the corner."
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