When your child gets diagnosed with a rare disease it’s difficult in the beginning to wrap your head around.
You’re left struggling to learn the ins and outs of your child’s new medical needs while also taking a crash course in the science behind their disease. When my daughter was diagnosed with cystinosis we had never heard of it before. Not knowing the basics of the disease and its prognosis left me feeling completely lost. I spent hours and hours online, pulling up every page I could find, reading every article and attempting to decipher medical journals.
No matter how much I read, I still felt like I was missing something.
What I was missing was that social connection. I needed to know what everyday life was going to be like. I needed quick and easy to read explanations of cystinosis. And mostly I needed to feel like I wasn’t the only one overwhelmed.
Social media has been a huge blessing in my life. Through it I have found those connections. I’ve made friends with parents just like me, I’ve seen their children playing and thriving and I’ve seen them band together to raise awareness. I’ve also gotten to know some pretty amazing adults living with cystinosis and doing what they can to give back.
Social media has become a source of information and news for a large portion of the global population and there are thousands of people and organizations that have taken to this platform to bring awareness to their cause.
Below are some of my favorite social media posts about cystinosis.
1. I couldn’t write this post without highlighting my own efforts, right?
Sometimes people don’t believe me when I say how much medicine Elsie takes a day, but here it all is! Since she’s just over 3 1/2 years old we haven’t taught her how to swallow pills yet so it’s all oral syringes. Here’s what her daily schedule is: 1:30am – Cystagon 7:30am – Cystagon 8:30am – Sodium Phosphate, Potassium Citrate and Spironolactone 9:00am – Eye Drops 11:00am – Eye Drops 1:00pm – Eye Drops 1:30pm – Cystagon and Potassium Citrate 3:00pm – Eye Drops 5:00pm – Eye Drops and Potassium Citrate 7:30pm – Cystagon 8:00pm – Eye Drops, Sodium Phosphate, Potassium Citrate, Spironolactone 8:30pm – Growth Hormone Shots and Enalapril And since she doesn’t eat much we also try to give her at least 3 cans of Pediasure a day and add DuoCal (extra calories) to her water. It’s a lot when grouped together and listed like this, but we pull meds and administer throughout the day so once you’re living it, eventually it just becomes routine. I’m grateful that these medications exist and allow Elsie to remain the active little pixie that she is ?
With cystinosis being so rare sadly many children are still being misdiagnosed in the beginning. I wanted to help raise awareness by listing some of the early symptoms of nephropathic cystinosis, the most common type. A child may have all of these symptoms or maybe only one. The ones that Elsie presented with early on were loss of appetite and no growth. We were lucky to be sent to BC Children’s Hospital where people with cystinosis had been treated before. Some families are not so lucky. #spreadawareness #raredisease #rarediseaseawareness #cystinosis #cystinosisawareness #themoreyouknow #knowledgeispower #kidneydisease #educate #information
A photo posted by Elsinosis (@elsinosis) on
2. The Cystinosis Research Network is always raising awareness and has become a great source of information on social media
3. This makes me tear up every time! Sam’s Hope For a Cure was lucky enough to attend Natalie’s Wish Gala this year where Rachel Platten lent her voice to help raise an enormous amount of money for cystinosis research.
I’m a real sucker for cute kids singing “Fight Song” with Rachel Platten. Couldn’t hold back tears while hearing the kids sing that last line. Toughest kids I know. We feel uplifted and ready again to tackle this disease. Thank you to CRF for raising $3.3 million tonight. 100% goes to medical research. #rachelplatten #dayofhope2016 #cystinosisresearchfoundation
A video posted by Ashton Jenkins (@samshopeforacure) on
4.When Nash Grier used his internet celebrity status to help raise awareness for his cousin and the Hope for Holt charity, thousands of people across the globe got a short and sweet crash course in cystinosis.
5. The one woman, momapreneur, Today is a Miracle, has done a tremendous job growing her brand and at the same time raising cystinosis awareness. I love her passion and her desire to make this world a better place.
If you don’t know someone living with it, you’ve probably never heard of Cystinosis. It is the reason behind my kidney transplant 21 and a half years ago when I was 11. Because it is so rare, (only 500 people in the United States) the majority of doctors I see have never heard of it either, unless I am seeing a specialist out of the state of Utah. This above is a simplified explanation. Remember, a key mission of our shop is to fundraise for better treatments and eventually a cure. Thank you all for your incredible support!
Taking preorders for our white super soft and figure flattering today is a miracle tees. 50% off with code PREORDER // Here is my personal story behind the shop: At my 12 month appointment my pediatrician had concerns that I wasn’t growing and that I had rickets. Fast forward 4 months later to December 1984 and I was diagnosed with Cystinosis. It took lots of appointments to nephrologists (kidney specialists), but I was so lucky. Lucky that I didn’t didn’t experience the horror stories some families go through. Cystinosis causes cystine crystals to build up all over the body. The kidneys are usually affected first, but it is so much more complicated than simply being a kidney disease. Because it is so rare, only about 500 cases in the United States, it is often misdiagnosed (even today!) and there is still so much unknown about it. When I was diagnosed, my mother and father were told I would not live to see my 10th birthday. I can’t type that without crying. Thankful to be here today at 32 and the momma of our miracle daughter. There are about 9 other women in the world with Cystinosis who have survived pregnancy. At the age of 11, my mother gave me life for a second time when she donated her kidney to me! I was truly blessed that I had a matching donor in my family. The wait for a transplanted organ can be years and many people die every day waiting for a second chance at life. In November 2014, I founded this shop to celebrate the 20 year milestone of my kidney transplant and to give back to fund the research for Cystinosis. Thank you for being here! Thank you for reading, thank you for following, purchasing tees from me, and all the love & light I’ve felt from this community!
A photo posted by Today Is A Miracle (@todayisamiracle) on
6. The Cystinosis Research Foundation always have the most amazing videos played at their annual Natalie’s Wish Gala!
7. It’s so touching to see how much Tori Lynn cares about her brother and how he’s inspired her to use her talents to support charitable causes.
8. Cystinosis Ireland is another great resource and their Facebook page is full of fun and informative graphics.
9. I’ve saved the best for last. I found this video on the first day that I frantically searched the internet for information on cystinosis. This was the first thing I saw that finally gave me some peace and even a little bit of hope that we could do this and that my daughter might just be okay.
Whether these posts have had thousands of views and likes, or just a few, they have all made an impact. They’re helping to educate, bring awareness and most importantly show the human side of cystinosis.
Once you make that social connection it’s easier to become impassioned and involved in a cause and I hope that some of these posts have done just that for you. If you want to help, you can do so by liking, following and sharing any of the above posts now, and any that you come across in the future. Every little bit counts and the cystinosis community is so thankful for all the support we receive.