What is dazzle4rare?
Dazzle4Rare is a yearly social media campaign designed to help bring rare disease communities together. According to Global Genes, there are around 7,000 known rare diseases. Groups supporting these rare diseases can be very small which makes reaching a larger audience difficult. But by networking and banding together, groups of all sizes can spread their messages of advocacy, education, and hope to more people.
How did it dazzle4rare get started?
My Mum died early 2016 and her twin (my Aunt obviously) died a few weeks later. Neither of them left any plans behind for burial or funerals. I came back to the US (from the UK) to help settle their affairs. I wanted to honour them but really was not sure how. They suffered tremendously with their health before they both passed. Their passing was very painful and also felt like a view into my future as we shared many of the same conditions and I wonder if there was not more known because they were also “complex” patients.
Around that same time, I became aware of a young man, very early 20s, with Hashimoto’s encephalopathy (also known as steroid responsive encephalopathy associated with thyroid or SREAT) who had gone missing in Utah. I reached out to his family but shortly after he was found dead in the mountains. This young man had just become a father for the 2nd time a week before and he left behind a very young wife with two very small children. The illness had taken hold of him and as a result, it changed so many of the lives around him.
I spent a lot of time talking to this young man’s sister trying to help raise awareness of HE/SREAT so that his death would not be without for nothing. I spent hours writing to news outlets to generate interest in telling this man’s story. He had only just been diagnosed with HE/SREAT and so little is understood about the condition. It was a tragic loss. I felt so much empathy for the family, having also just lost two loved ones myself (incidentally, this young man and my Mum shared the same birthday, August 12th).
Close in time to this, a young woman named Derya (#FreeDerya) had been put on a mental health ward with seemingly no way out, despite being days from receiving IVIG for autoimmune encephalitis. Her prior medical diagnosis was put aside for a bi-polar diagnosis despite her symptoms being well explained by neurological disease. Her story very much mirrored some aspects of the NY Post writer, Susannah Cahalan. I spent a lot of time speaking to her family via the internet as well trying to reach out to news outlets and spread the story. Eventually, though there was not much media interest, a local government official did become involved and Derya was finally released after I believe about 70 days. I am sure readers can imagine the pain and distress her parents experienced during those long days and nights. It was an absolute blessing when she came home. I recall crying with joy when I heard from her mother.
The common denominator I saw in the stories of the young man and Derya, who were about the same age, was that there was so little understanding of their suffering and so little interest in the media to share their stories. These events were keeping me awake at night, brainstorming about how to reach more people when the idea for #dazzle4rare came to me; a full week of rare disease communities around the world joining together to exchange their messages, draw strength from each other’s numbers, and reach the people who need to hear their stories the most.
I could not think of a better way to pay homage to these people and the many patients whose stories I wanted to share with a greater audience than #dazzle4rare. The stories of rare disease patients, their families, and the stories of the undiagnosed truly needed telling, as they still do. We have so much to tell the world and yet it’s so very hard to reach people when you are part of 10% of the population spread out around the world. These stories are often relegated to a corner of the nightly news, a small square of news print, or word-of-mouth between neighbours of a friend-of-a-friends who suffered with XYZ disease. I had hoped, and do hope, that we will be able to put human faces to these 3rd party stories passed around with only some passing interest. These folks deserve much more.
Are you affected by a rare disease or is a loved one?
I am undiagnosed.
That is not to say I have not been diagnosed with anything but more to say I have been diagnosed with various a la cart conditions, then having a diagnosis changed or amended, and so on. I had an experience very similar to Susannah Cahalan at 21 which included myoclonic seizures, changes in my mental status, and finally what seemed like a decent into madness. It was a terrifying and lonely time which took many years to recover from. That experience was almost 17 years ago, well before autoimmune encephalopathies had been discovered. I still persist with a lot of issues but am lucky to make the most of what life has handed me by spending my time working with others. I still struggle but for me, I have accepted now is not the time to focus on me. While I hope genetic testing and fresh evaluations may one day lead me to my own answers, my energy goes into helping those I can help. I don’t believe in “moral desert” but rather doing the best I can and enjoying seeing people’s lives get better rather than waiting to hit some unlikely “health lottery” for myself. I’m very lucky and I’m thankful for that every day.
Would you like to bring awareness to the rare disease that helped you started dazzle4rare?
I very much would like to do that! There are so many kids struggling with HE/SREAT and yet the treatments can be so hard on if not inaccessible totally because of the detrimental side effects on young people. These kids have a lot of life left to live and I feel we owe it to them to do the hard work now for their future as we as their children, especially if there are genetic components to conditions like HE/SREAT.
As an example, our youngest known patient in the HE/SREAT community was about 3 years old at diagnosis. She came quite close to death. Another family I have spent a lot of time talking with has a daughter who is about 11 now. The mother and I became friends via the Understanding Hashimoto’s Encephalopathy Support Forum and she has kept in contact with me, sending me photos of her daughter and letting me know how they are getting along. Often, I have felt so helpless, only able to provide my emotional support to these mothers, as a mother myself, and I know if we want to see change, we must get more involved in the outcomes for patient communities like the HE/SREAT community. We have reach more people with our messages, we have to get involved in research opportunities, and be proactive.
With that said, I have met through the first #dazzle4rare campaign a lot of folks in many communities. People like April (aka GP Queen in the Gastroparesis community) and Monica Andrade (a part of the CSF leaks community, an uncommonly diagnosed leak of the spinal fluid which causes a myriad of horrible symptoms). These gals have become friends of mine and I am just as invested emotionally in the outcomes for their communities as I am in the HE/SREAT community which I have spent hundreds of hours deeply involved in.
Please share your journey about dazzle4rare and it can be shared on my BlogSpot to help bring awareness to dazzle4rare.
For me, it started as a way to work through the grief over losing my Mum and Aunt, then became a way to also help honour the young man I mentioned earlier, a way to help raise awareness for young people like Derya, and it has grown substantially for me emotionally. I have met so many wonderful people as a result and I have been blessed with some amazing people who are in my life because of this work. We are lucky, the little group we have, to have each other and share a goal of spreading our messages of education, advocacy, hope, and progress in the rare disease communities. These folks inspire me daily and I hope that their work inspires others. I know it’s an often a helpless and hopeless road, rare disease, but it does not have to be so lonely. There are so many people who struggle in the world with these conditions and there is a wider community in the world that is ready to accept these people and offer support.
Ideally, I think the best way for folks to participate in #dazzle4rare is to join our Facebook event first. From there, I would encourage people to share their own stories of rare disease, advocacy, and education on their social platforms using the #dazzle4rare hashtag. We will reshare as many tagged posts as we can. I would also ask people to also encourage folks from their communities to participate and tweet, share, like, and otherwise disseminate the approved community messages with others.
If someone would like to add their community to the list, please reach out to us from the Dazzle4Rare Facebook page via message so we can add your community. The more the merrier most certainly. The internet is a big, big place but again, I believe in strength in numbers and if we band together, we can make an educational impact on social platforms and reach more people than we would have ever before in our own groups. Often, we insulate ourselves inside our own support forums and groups and often do not get a chance to reach out to more people. This is the time to for all of us to make the rare disease community a force for good on the internet, an inclusive grassroots patient movement.
How long has dazzle4rare been around and what is the goal of dazzle4rare?
We started the summer of 2016 and this year, 2018, will be our third year. Our continued goal is to network with rare disease communities of all sizes, collect their messages of education, advocacy, and hope, and spread those messages to other communities. Between us all, globally there are approximately 350 million people worldwide who are living with a rare disease. That is an overwhelming number but my hope is if we can reach a fraction of those people and their families with our messages, perhaps we can help affect some change in people’s lives. Whether that change is learning about a condition that they may be living with as a diagnosed person or whether that’s finally connecting with others who share their condition or learning how to advocate for themselves more effectively – however the end result works, it is an absolutely worthy cause. I do not want mothers to spend hours awake at night wondering where to turn for help for their rare child, or another young person to lose their life too young because their condition is poorly understood or unresearched, or a person like myself living for decades searching for answers which seem unattainable. There is tremendous strength in numbers.
Thank you, Anna, for giving me the opportunity to share a bit about #dazzle4rare with you and your readers!