This month we asked: How can you help friends, family—even strangers to understand what life is like with a rare, chronic or genetic illness? We wanted to see your Random Acts of Awareness and you sure didn’t disappoint! Here are just some of the entries received for this month’s contest. Make sure to tune back in tomorrow to see who the winners are!
“My daughter has mitochondrial disease. We were inspired last February when we went to the Pasadena Rock N Roll marathon. We saw that they are spreading the word about Mito. We decided to not only join the 5K but throughout the year we had a booth at the homeschool fair, had yard sales, passed out flyers, posted on Facebook and created a blog. It is so important to us that people know about this disease, we can’t fight it alone.”
By Kari Forbar
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“I posted my story as a video to YouTube. You can see it here: https://www.youtube.com/watch?v=V_UNh-KcIUU”
By Ann Havelock
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“I share global awareness by having the genetic disease symbol tattooed on my shoulder. I explain it quite often that I have a genetic disease and I feel very good about the tattoo itself because it’s a big part of what makes me who I am and my everyday struggle, as it is for many people. I am very open and honest with people when they ask me and I’m not ashamed. It is what it is, and I believe if more people were aware there’d be more funding and research for cures, also just more support in general.”
By Amber Yamada
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“My two youngest children, Ciera and CJ, were injured by their vaccine shots when they were approximately 5 months old, which left them totally and permanently disabled. I have done several things to bring awareness like their webpage at http;//www.caringbridge.org/visit/ciera.cj.davis/mystory and Facebook, but the one that seems to have made the most impact is a tattoo I designed and had put on my wrist. It’s a black ribbon with a white line through the middle with the letters VIA “Vaccine Injury Awareness” and “x2” with blue highlight on one side for CJ and pink highlight on the other for Ciera and the word “Faith” by my husband’s handwriting at the bottom. It’s always a conversation starter at the store, doctor’s office…everywhere really…People always ask “what does that mean? or stand for?” so I am given the opportunity to share our story over and over for always….”
By Melissa Davis
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“We work daily to raise awareness for rare and undiagnosed diseases. We wear our hope bracelets and have our Global Genes magnet on the back of the van. We have a Facebook page where we share our story of finding a diagnosis and share information about rare diseases. We “advertise” for organizations that are dedicated to rare diseases and the undiagnosed on the Facebook page. We wrote a letter to our families explaining why we are seeking answers for our children, how our answers might impact them and how they can help. We have also allowed our local paper to interview our children and share our story. Here is a link to the story that they recently ran. There are two other smaller pieces in addition to the larger story. We do our best every day to raise awareness and promote HOPE for those with rare and undiagnosed diseases.
Legislation could help undiagnosed community: https://www.newarkadvocate.com/apps/pbcs.dll/article?AID=2013307200033&nclick_check=1
Families need support while searching: https://www.newarkadvocate.com/article/20130720/NEWS01/307200032/Families-need-support-while-searching-diagnosis-Ohio-State-physician-says
Hanover family struggles: https://www.newarkadvocate.com/article/20130721/NEWS01/307210006/Hanover-family-struggles-frustration-isolation-they-search-diagnosis?nclick_check=1
Erin’s page is : https://www/facebook.com/answers4erin “
By Sherry Selfe
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“Shopping and Sharing: We were at Sam’s Club the other day and one of the ladies serving samples offered my daughter, MaKaya, age 10, a drink of iced tea. I had to look at the label to be sure there wasn’t anything in it that she could not have since she has multiple severe food allergies and Eosinaphlic Esophagitis. We got to talking about how she had other the disease and how her having Kabuku Syndrome has affected her immune system and other parts of her body. The lady then asked me what the syndrome was, so I was able to explain it briefly to her. Anyone passing by could have heard the conversation, so you never know what seed was planted!”
By Kat Yockey
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“I have Diffuse Systemic Scleroderma. I am a little over two years into my diagnosis. The past two years of my life has been the hardest struggle, battle and fight I’ve had to endure. My disease has changed me, it has taken from me, it has hardened not only parts of my body but, parts of my spirit. Scleroderma is like a spider web in your body AND your life. It attaches itself to every fiber! Relentless in its building of a snare for which you have a hard time finding light within.
I made the decision to keep fighting, to stand tall, to push through, to make it through Diffuse Systemic Scleroderma MY way! Like Frank and Elvis….I wanna do it my waaaay 🙂 I began making craft items (jewelry, sun catchers , wreaths and even taught myself to crochet) to help with keeping my hands working 🙂 And raise money for a trip back home to Virginia to visit my family. It has been two years since I have been back home :*(
But, as the days went by…the more I felt I was morning and grieving the “loss of me”, I decided I didn’t want my disease to be about pain, anger, sadness, anguish etc. I wanted it to be for good, love, kindess, sharing and something wonderful outside of the horror I go through every minute of my day. So, I started the Facebook page below. I donate the money I make to Scleroderma Charities, fundraisers, fellow Scleroderma sufferers etc. I use it to purchase supplies to make that happen or I use it for postage to mail out items to scleroderma warriors. Such as Medical Record Notebooks. Whatever I can do to help those Scleroderma Warriors.
https://www.facebook.com/Sclerodermafighter71”
By Karen Cyrus
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“We raised awareness by making a short film (5mins) about our son, Finley, and entering it into this years Neuro Film Festival. It’s called Finley – living with PVNH and can be found on YouTube: https://youtu.be/QLS-367Bpdc”
By Sara Lamb
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“Please take a moment to watch this song and video I created last year to honor our “Little Birds“ with Mitochondrial Disease. https://www.youtube.com/watch?v=HQIqBQboKNQ”
By Stefani Bush
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“The following message is the story attached to the Facebook album, please continue to read and at the end, please click on our link: Gabriel and I began creating jewelry together to bring awareness to “special needs”, one of which is autism. This hobby has been great for Gabriel’s fine motor and focusing skills. Here is our facebook link to our album titled EARTH ANGEL CREATIONS:
https://www.facebook.com/media/set/?set=a.408229825902739.94899.100001471752381&type=3
By Sandra Motonaga
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“I created the social media awareness campaign called rareACTION. I wanted to show people how easy it can be to raise awareness for rare diseases. Any daily activity can bring awareness to rare diseases. When people do something to raise awareness for rare diseases, they can post it to social media sites with the tag #rareACTION. For my rareACTION endeavors, I made about 20 different shirts to promote rareACTION. I wear them during various activities. I usually wear them in places where there are a lot of people because I’m bound to run into another person who has a rare disease (since 1 in 10 in the United States do). I even created a rareACTION magnet for my car so that I could #rareACTION everywhere I go!
I’m also in the process of filming a 3 part YouTube documentary. In about 2 weeks, I am having my yearly tests related to my rare disease to see if I’m still in remission. My disease is called Gardner Syndrome and having it basically means that I will get colon cancer at a younger age if my disease goes untreated. In two weeks, I’m hoping to celebrate 8 years of remission (I had non-cancerous polyps when I was diagnosed and for the most part, they have just about disappeared thanks to a NSAID drug treatment). My first video will be filmed within the next week, where I will be introducing the documentary series and talking about what my disease is and the importance of people with hereditary colon cancer diseases getting screened early and being proactive. Then I will be making a video about all of the ways to make a colonoscopy fun because with my disease, screening tends to start at a younger age. I was 14 when I had my first colonoscopy and I have met children who have had them at an even younger age. My final video will be a documentary of what it is like preparing a colonoscopy.
I hope to raise awareness for all rare diseases. Rare diseases know no boundaries. My brother and I are in remission from Gardner Syndrome and I have yet to meet anyone else like us. My hope is that my YouTube documentary series will empower hereditary colon cancer patients and their families to be proactive about testing early, before surgery becomes the only possible intervention.
My YouTube channel can be found here: https://www.youtube.com/channel/UCu9GETG_NjweF5SGV5E_53A
rareACTION can be found on Facebook (facebook.com/rareACTION) and Twitter (@rareACTION).
By Alyssa Ziegler
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“There’s a lot to be said for hope and miracles. I share my story of Cowden’s Syndrome and Lhermitte-duclos disease (brain tumor) on my blog and at times will post it on Twitter on Thursdays (for #braintumorthursday). But most recently I just had t-shirts made for my mom and I with my blog site on the back! Any little way I can help create a win for Cowden’s – I’m in!”
By Heather Z
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“A few years back in the early days of finding out I had Fibromyalgia, I was jumping from specialist to specialist to find the cure all to end the pain and other symptoms. I had a friend who was diagnosed ten years prior to my diagnosis. She told me something one day that changed my life.
I called her one morning on the phone and proceeded to gripe about my aches and pains and not wanting to do anything. She listened to me for a while and then she said something to me that made me mad. She told me “Accept it and put one foot in front of the other, and do what you would normally do, even though it hurts.
This really made me mad and I couldn’t possibly do this. I hurt too bad and I knew some doctor out there had the magic solution!
A few years went by and after jumping from doctor to doctor I decided maybe my friend was onto something! At this point; I was not taking any medication except ibuprofen and the occasional acid reducer. I started changing the way I looked at this illness. I knew at that point she had been right. I accepted the fact that I would probably always have this chronic pain and I had to make the most of my life while I still had one.
Every day from that point on I get up in the mornings (sometimes afternoons) and I tell myself, no matter what or how I feel I need to keep going. I do what I can and get help from family with chores, when possible. I started school to get my degree in Psychology so I could help others who suffer with chronic pain. I got busy!
This has worked for me. I am happy today and the pain and other symptoms are tolerable. Even though it took a few years for me to know this, this was the kindest thing someone has ever done for me. I live life today, instead of letting it get me down.
Recently, I was having a conversation with a lady about her Fibromyalgia. She was telling me all the medications she has tried and how she was so frustrated with the medical system. When she finished, I looked at her and told her, “Accept it, put one foot in front of the other every day, and live life, no matter how you feel”.
By Debra Smith
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“About three years ago my niece, Isabella, was diagnosed with leukodystrophy, also known as vanishing white matter disease (VWM). When I got the call from my sister, it was quite a shock. Like most people, I went through the stages of grief: denial, anger, sadness. I came to acceptance, last year when Professor Orna Elroy-Stein contacted us about helping her raise funds needed to find a cure for VWM.
The idea to “Find a cure for VWM” fundraiser was born; it allowed me to do something about it. I can’t be a scientist finding a cure, so this is what I have to do, raise the money to fund the science. It’s what we all have to do because I can’t do it alone. We’re doing this not just for my niece, but for all kids with VWM. We’re at war with this disease. Currently no treatment or cure is available for this disease. Although research has proven to yield positive results, research into the disease is not very well funded by medical institutions and it needs the help to continue.
Last week my 6 year old daughter daycare center had a “Lemonade Stand for VWM”. They raised $80.31 to help us find a cure for VWM. Not only they are helping to save my niece but they are also spreading the word about leukodystrophy. “
By Donna Skwirut
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“I’m an avid runner from Charlotte and co-founder of Taylor’s Tale, a non-profit organization dedicated to fighting Batten disease and other rare and genetic diseases. On November 16, I’ll voluntarily run Charlotte’s Thunder Road Half Marathon blind to honor my sister Taylor, build awareness of Batten disease and raise money for gene therapy research at the University of North Carolina. Taylor, 14, ran two 5K races in 2008-09 as part of the Girls on the Run program despite being blind. I’m running Thunder Road blindfolded to honor the five-year anniversary of her first 5K.
I write a blog, “Write the Happy Ending,” about Taylor’s story and our fight against rare diseases. During the month of July, I published six blog posts about my training as well as coaching my mom, who has never run a race but will run her first 5K for Taylor on the same day that I run a half marathon blindfolded. Links to all six posts are below. The blog series has succeeded in not only engaging our regular followers, but also people from outside the rare disease community who are runners and/or read/follow running-related content. This is important – we’ve always said that we must grow our story outside our inner circle and reach new people through stories and topics that interest them in order to achieve our goals.
Blindfolded running-related blog posts in July:
When to Fold a Hand: https://writethehappyending.
Just a Little Rain: https://writethehappyending.
Just the Beginning: https://writethehappyending.
Uneven Ground: https://writethehappyending.
My Turn to Coach: https://writethehappyending.
Competition: https://writethehappyending.
p.s. Run to the Light, published on June 5, explains the story behind the blindfolded run: https://writethehappyending.
By Laura King Edwards
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