PLEASE HELP RAISE AWARENESS
I have recently learned that May
is both National photography month and Ehlers Danlos Syndrome (EDS) Awareness
month. Both of these things mean a lot to me Photography is the one thing that
I love to do and well is my addiction. EDS is on the other end of the
totem pole it’s not something that I like at all but both me and my 8 year old
daughter are stuck will this Illness and I am always trying to raise awareness.
I love that photography captures just
one moment in time. With the growth of video and its intrusion into our daily
lives in the form of TV, movies, YouTube, and even smart phone videos, the
notion that you can watch a video of a sporting event for instance, but miss
the incredible look of determination on an athlete’s face means we still need a
way of capturing a SINGLE moment. That’s what photography does that videography
does not.
I have a
REALLY bad memory. To the point where stuff
just disappears; Whole events, years, decades, people just gone. I think it’s something to do with EDS But
when I have pictures things solidify in my brain and I retain some memories,
flickering alone in the emptiness of my past. Each slice of our lives is
available for memory protection thanks to photography. That’s pretty amazing.
Most important of all it Makes me happy. When I’ve nailed
it I get this lovely glowing feeling of satisfaction. Even when it’s an
accident. When other people say they like something I’ve done, that’s
pretty cool, too.
WHAT IS EHLERS DANLOS SYNDROME
Ehlers–Danlos syndrome (EDS) (also known
as Cutis hyperelastica[1])
is a group of inherited connective
tissue disorders, caused by a defect in the synthesis of collagen (Type
I or III). The collagen in connective tissue helps tissues resist deformation.
Collagen is an important contributor to the physical strength of skin, joints,
muscles, ligaments, blood vessels and visceral organs; abnormal collagen
renders these structures more elastic. Depending on the individual, the
severity of the mutation can vary from mild to life-threatening. There
is no cure, and treatment is supportive, including close monitoring of the
digestive, excretory and particularly the cardiovascular systems. Occupational
and physical therapy, bracing, and corrective surgery may help with the
frequent injuries and pain that tend to develop in certain types of EDS,
although extra caution and special practices are advised to prevent permanent
damage. ******http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome#Other_types*******
Ehlers Danlos syndrome affects people in many different
ways and on many different levels. Some DO have it worse than others would I
say i have it worse than others some yes and some defiantly not some
people don't have any pain and live a normal life but the majority of
us have Chronic pain.
The most life threatening type
of EDS is type 4 the vascular type and the most painful type is type 3
the Hypermobility type. There Are many types of EDS at least 10.
How does it affect my daughter and I?
Both my daughter and I have
the hypermobility type it hasn't effected my daughter that
bad as of yet she has dislocations of her fingers and knees without any warning
or trauma causing the dislocation She bruises very easily and her
immune system is somewhat weak she is susceptible to ear infections,
infections from ingrown nails (that cause her fingernails to raise up and fall
off) also, when she was around 1up until she was around 5or6) she had to wear
orthotic inserts to keep her ankles and shins from turning inward ( that was
the worse hearing her cry every night because her shins were turned in and very
weak)
Myself I have many of the conditions that come along with
EDS i am only going to name some of them
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