Cystinuria Awareness Day2021-07-09T14:25:59-07:00

June 24 is Cystinuria Awareness Day.

Together, we can raise awareness of Cystinuria throughout the entire month of June – with a concentrated focus during the week of June 21-25.

Ever had a kidney stone, or know someone who has?

If so, you may understand the excruciating pain associated with them. Men and women alike, often describe the experience as the worst and most intense pain of their life. Imagine having multiple kidney stones per week or month. This is the life of a Cystinuric.

Cystinuria is a rare, debilitating genetic disorder characterized by frequent and recurrent kidney stone formation. Those who suffer from Cystinuria can experience kidney stones as frequently as daily. Because there is no cure, a Cystinuric can expect a lifetime of producing kidney stones and dealing with the associated pain and expense.

People suffering from Cystinuria can have frequent hospital visits and surgeries to remove kidney stones or manage the pain related to kidney stones. There are very few options when it comes to therapeutic drugs to manage Cystinuria. Between the cost of surgery, and the drugs to control the disease, life as a Cystinuric can be extremely expensive. Fortunately, the Affordable Care Act protects those with cystinuria and other preexisting conditions from discrimination by health insurance companies.

Cystine stones form very quickly, sometimes overnight, unlike other calcium oxalate stones which can take years to form. The larger stones may require surgical interventions, but surgery is usually the last resort because of the sheer quantity of stones a Cystinuric produces each year.

In the US, Cystinuria affects approximately 1 in 10,000 people, so it’s not unusual for Cystinurics to have to explain their condition to medical staff. Cystinuria does not discriminate, and affects people of all genders, races, ethnicities, and ages.

Cystinuria is a genetic defect the impairs intestinal absorption and renal reabsorption of cystine. Cystine is then excreted at high levels through the kidneys and is insoluble (meaning not able to dissolve). In this environment the cystine crystalizes, forming stones and potentially causing damage to the kidneys.

Through Cystinuria Awareness Day, we hope to bring more awareness, research, and awareness to this debilitating disease.

Painted Stone Submissions.

Paint your stone between now and June 24.  When you are done, snap a photo and  submit it online here and we’ll post them on the site, and pick the winners ?

Cystinuria Warrior

With all My love for all the cystinuria Warriors in the world, My stone represents My flag, and the stars are Made of stones from My surgeries.

Dawn Bare

Cystine kidney stones come in all shapes and sizes ranging from pebbles, to rocks to boulders….The Bares didn’t have a hard time finding some stones to paint in our back yard for this years fun stone painting challenge. Ironically, our pool is kidney shaped as well. Cystinuria Awareness Day Rocks !

Dawn Bare

Found this one on the FB page… Thanks Dawn!

Daniel Gibson

Also from FB.  Might be a first.. 😉

Personal Stories of People Living with Cystinuria

If you would like to share your personal Story CLICK HERE

My cystinuria and me.

My cystinuria and me. Hello, I am Nathalie, Venezuelan, married, 40 years old and clinical psychologist. My medical history began in 2004, at the age of 23 years with the following symptoms when I woke up one morning, I [...]

Strength and Perseverance

Strength and perseverance NOTE: this is an update to their original story HERE Strength and perseverance are the two words I’ve used in describing any individual with Cystinuria…. and that means my 3 Bare Kids as well. I have [...]

Living with cystinuria

Living with cystinuria My name is Mandi Payne and I have been suffering from cystinura for 5 years. Throughout those years I have undergone around 20 surgeries and pain every single day.  I want to share my story because [...]

Stone Survior

#stonesurvior My name is Bee Salinas, I am 33 years old and I was diagnosed with cystinuria when I was 18 months old. I have been through countless procedures 25 to be exact. Growing up I didn't get the [...]

Christina Davis

Christina Davis I am 61 years old. I have suffered with Cystinuria since I was about 9yrs. Although I was not diagnosed until I was 17. When I was taking my college physical I was told what I had. [...]

Helen’s Story

Helen's Story Helen Guerra, a 20-year-old resident of Miami, has lived more than half of her young life diagnosed with a rare kidney disease called cystinuria. She led a fulfilling childhood filled with a love for reading, dancing, [...]

Sierra Gibbs

Sierra Gibbs Sierra Gibbs is a sophomore at California State University, Long Beach. Her life may seem like everybody else’s around her, but her story is not.  At 13, while growing up in Colfax, CA, she was diagnosed with [...]

Michael’s Story

A Patient's Story: Michael Eckstut (New Jersey) Skillman resident Michael Eckstut, 69, enjoys a full and rewarding life in his roles as a husband, a father to three grown children, and a successful executive at a pharmaceutical services company. [...]

Leah’s Story

Leah's Story - Life with Cystinuria Leah, a 42-year-old resident of Montgomery, Michigan, has struggled with kidney problems from the incredibly young age of 2. Her journey of uncovering the truth behind these medical issues would take 40 years [...]

SHARE YOUR STORY

How Can I be involved?

1. Donate or use Amazon Smile!

You can donate or simply use amazon Smile in our name and you’ll donate while shopping…  Details Here

2. Paint a Stone and Share it (There are Prizes…)

Feeling creative? For something on the fun side, paint a stone that represents you and your journey with Cystinuria.  One of our FB members actually hides them in her community where people can find and enjoy them. Maybe start that tradition in your town? Paint your stone between now and June 24.  When you are done, snap a photo and  submit it online here and we’ll post them on the site, and pick the winners 😉

3. Does your state currently
recognize “Cystinuria Awareness Day” ?

If you would like to help represent ICF, to have your state recognize Cystinuria Awareness Day, please contact us.

Whats involved if I want to have my state recognize Cystinuria Awareness Day?

Michelle Gibbs was instrumental in getting the day officially recognized in California.
Here is how she describes how the process went for her.

Firstly, I would say, anyone interested should message Gayle Sweeney a the International Cystinuria Foundation. She has been coordinating these volunteer efforts for year, and knows which states already have either a proclamation or resolution for Cystinuria Awareness Day.

Anyone interested should message Gayle Sweeney. She has been coordinating these volunteer efforts, and knows which states already have either a proclamation or resolution for Cystinuria Awareness Day.

I jumped at the chance to make that happen in my state!
Since some states already have similar bills, Gayle had someone send me a sample of the language from another state, so I just needed to make a few changes here and there to fit my particular state. From there, it was a matter of contacting the right person in the state legislature to ask them to introduce the bill for me. I began this quest back in 2019. Each state has their own rules and deadlines on the process, so my initial request for a proclamation had to be changed to a request for a concurrent resolution.

My representative in the state Assembly agreed to introduce the bill, but he also happened to be running for a seat in the Senate that year, which delayed the resolution. At first, this was because he was in the middle of an election, and then when he won, he had to change his office and staff over to the Senate. With all these delays, we missed the deadline again, so I had to wait to contact him at the beginning of 2020. We all know how that year went! lol

After successfully introducing the bill, getting a unanimous vote to pass the bill (39-0) in the Senate, Covid hit and the resolution ended up “dying” because our legislature stopped meeting, and it was never heard in the Assembly.

With 2020 behind us, I took a chance and contacted my Senator again in January of this year to ask if he would re-introduce the bill. He agreed, and we just got our new bill number! I didn’t have to rewrite anything. The moral of this story is, “persistence is key.” I don’t think the process itself is hard. I also think it’s probably usually a lot faster!

– Michelle Gibbs

4. Share your story about what it’s like to live with Cystinuria.

Share your story and we’ll post it on the site.  As we raise awareness of Cystinuria, its good to have real life stories of what it’s like living with this disease so people can understand Cystinuria and the impact on people lives and those around them.  Click Here to Share Your Story

5. Get Social

Below are easy ways to participate and help raise awareness of this debilitating disease.

  • Frequently share social media content and graphics throughout June.
    To make it easy, you can simply copy and paste from the samples provided below. If you or someone in your life has been personally impacted by Cystinuria, please customize these samples and/or create your own social media content. It’s important for people to hear about the personal experiences and life journeys of people living with Cystinuria.
  • Add a frame to your profile pictures on your social media accounts.
    Design options and instructions on how to add a frame are provided below.
  • Change your Facebook cover photo to the design provided with instructions below.
  • Use a Cystinuria Awareness virtual meeting (Zoom) background.
    The background design and instructions on how to use are provided below.
  • Share this social media toolkit document with your friends, family, coworkers, and others
    Also ask them to also participate through these 5 easy ways!
DOWNLOAD SOCIAL MEDIA KIT

You can make your own personal images with the transparent frames below.  Just “right click” and save them to your computer.

EXAMPLE

Transparent Social Media Frame

Transparent Social Media Frame

Transparent Social Media Frame

Facebook Banner

Zoom Background

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