although my transplant did no doubt save my life, cystinosis still affects every other organ in my body with the buildup of cystine crystals. the truth of the matter is that awareness is a big passion of mine because this disease is so rare, research funds are severely limited. that is just how it is. we don't have the reach or the household recognition of other medical illnesses that affect a larger population. the majority of our research funds must come solely from family fueled fundraising efforts. at times this can feel like an impossible uphill battle, however the blog world fascinates me with the kind hearted people out there and i am thrilled to bring you this endeavor today!
cystinosis causes the body to make toxic amounts of the amino acid, cystine. this results in cystine crystals building up in every cell, tissue, and organ of the body. my native kidneys were destroyed by the time i was 11 years old, resulting in my transplant. other obstacles in battling cystinosis include, muscle wasting complications (hand weakness and choking due to esophageal muscle wasting), diabetes, and blindness (due to the crystal build up in the cornea of the eye.) the medication regime is relentless as well, cystagon every 6 hours and eye drops every waking hour.
the only treatment for cystiniosis is a drug called cysteamine that has side effects that echo those of the harsh ones of chemotherapy; extreme fatigue, overwhelming nausea, headaches, dizziness and more. in addition to this, the medication must be taken every 6 hours. many people living with cystinosis cannot tolerate a full dose of cystagon due to the debilitating side effects, thus the cystine crystals continue to build up and cause irreversible damage. with people banding together and working toward a common goal to improve treatment, i truly believe a difference can be made in how this disease is treated.
my heart is bursting with love from these fabulous companies who have donated products and credits to their amazing shops. visit them, love them, support them. they are true gems in joining my celebration and adventures in awareness!
with a simple $5 donation to cystinosis research, you can win all of the following goodies; nearly $300 worth of fun, happy, things! instructions on how to donate and enter are below! :)
Lil Blue Boo
blog | twitter | facebook
$25 credit to
Three Bird Nest
shop | facebook | etsy
$20 credit to
The Sweet Sugar Beet
etsy | facebook | blog
$30 iTunes gift card from
(celebrating their two newest apps in the apple app store:
ABSmatic and Put A Bird On It!)
26 oz cinnamon candle
16 oz sugared vanilla bean candle
8 oz clean sheets candle
5 oz cucumber melon candle
(special thanks to Melanie for this donation!)
fold and go organizer with notepad in patchwork paisley from
Lauren with Thirty One Gifts
(Lauren is the mother of an awesome, brave little boy with Cystinosis)
Trunk Keeper ID #133
TO ENTER TO WIN EVERYTHING ABOVE:
make a $5 donation to
you can donate HERE through Paypal
it is as simple as that! :)
Multiple entries may be purchased if desired.
A $10 donation is two entries, $15 is three entries, and so on.
Giveaway is open to U.S. residents only.
(Thank you for understanding!)
Giveaway will end Wednesday, November 7th, 2012
Winner will be picked at random and announced on
Thursday, November 8th, 2012.
Thursday, November 8th, 2012.