A “Call To Action”

I saw a “call to action” from my US Pain Foundation family in January, about the upcoming “Rare Disease Day”, on 2-28-18. I went to Rarediseaseday.org to check it out. There was so much information and 2 of my illnesses (CRPS & EDS -4/Vascular) we’re on the list! I downloaded the social media packet and started sharing in each of my groups & on all of my pages, Blog etc. I wrote to the event facilitators and they posted “my story” and a video that I had made, about CRPS.

(Here’s the link: http://www.rarediseaseday.org/stories/6082)

I was really excited to share more about this day as people started asking me more and more questions.

After calling around, I found a venue to host my own “Rare Disease Day” event. Within minutes, the Township Supervisor, Pat Williams (whose helped me with “Pain Awareness Month” proclamations etc.), found me a venue in the Canton Leisure Services building, called “The Summit”.

The event day finally arrived! But as I was getting things ready to take with me, I had a bad fall. In trying to maneuver steps without anyone else home, my foot didn’t clear the step and I stumbled while going upwards. I was in a great deal of pain, but I couldn’t let down those sho were counting on me. My husband and I decided to take my wheelchair, which I usually reserve for outings where I might be walking a bit more. I needed it and it helped me get through the evening.

This Awareness event turned out to be one of my favorites! It was in the lobby, so people were coming “in and out”. It was quite busy with people from the pool area and the gym.

Many people stopped and asked questions Like, ”What is Rare Disease day? What is the US Pain Foundation? Why are you here?” Etc. I had some medical professionals stop and we exchanged our “Rare Disease Day” online stories with each other! They showed me their photos and told me about the research they’re doing on a few “Rare Diseases.” There was another medical professional and a couple Physical Therapists who also were very interested in the INvisible project and other information that I had with me. I got the chance to give out my new chronic pain Support group information when several people stopped to tell me their “story.”

I had downloaded the Rare Disease Day info packet from the website and made copies. Those were also popular with a few High School students who stopped by my table, at first because the candy bowl caught their eye! But they told me about upcoming projects that they have to do. They wanted all the information that they could get. Not surprisingly, there were many people interested in the Migraine & Rheumatoid Disease editions of the INvisible Project. I even had the family of a Veteran, ask if they could take one of those editions home for a relative who’d been in the Korean War.

All in all it was the best event I’ve had and it felt like I reached a lot of people, answered many questions and listened to many sad stories. But I also gave US Pain Foundation information to several persons. It felt as though I was giving them hope. “Hope” for themselves or someone they love who lives with chronic pain due to a rare disease.

Lastly, I think that I recruited some new US Pain Foundation, Chronic pain Support group members. They seemed genuinely excited to have a platform to be heard and to talk with others going through similar situations.

Are You Aware Of #RareDiseaseDay?


Did you know that “Rare Disease Day” is coming soon, on February 28, 2018?  Do you  know that “rare diseases” aren’t so rare after all?  According to the the National Organization for Rare Disorders, there are 7,000 rare diseases and disorders that all together affect 30 million Americans; majority of these are children.  In other words, 1 in 10 Americans live with and suffer from rare diseases. This day is an annual celebration to recognize and bring about awareness to the public but also to decision makers.  We can each make a difference by either hosting an event, participating in online activities or doing both. Rare Disease day always lands on the very last day in February, the 28th or 29th (if Leap year). Each year we try to increase awareness and knowledge of rare disorders and bring attention to the kind of impact that they have on these people’s lives.  Most of these have no cure.  Sadly, they largely go unrecognized, under-diagnosed and misdiagnosed. Another fact is that the majority of these diseases, about 95%, have no treatments available and no cures.

The U.S. Pain Foundation supports “Rare Disease Day” and therefore we have provided several ways to include this day in your communities worldwide.  We feel that this special day “falls in line with the organization’s mission to connect, inform, empower and educate chronic pain and invisible illnesses.”.  There are many ways that you can can become involved in this event.  One way that you can raise awareness, is by hosting an awareness event table in your city.  You may visit the U.S. Pain Foundation website at the link provided in the above quote, to read more about this day and the events surrounding it. You can also visit the www.Rarediseaseday.org  website to get more background and historical information about this day.  If you would like to participate in worldwide events you can visit:  http://rarediseaseday.us/events.

Other ways to become involved are to: “Save the date” of 2-28-18, because #NORD  will be hosting a #tweetchat (#RDD18Chat) on #RareDiseaseDay at 1:00-2:00pm EST.  You can also retweet some facts, such as this one: “There are 1 in 10 Americans that live with a #raredisease.  That is 30 Million Americans!”  You can download the special Social Media logo’s etc. and post them on your Facebook Cover picture and your profile photo.  There’s also an official YouTube video that you can share on your own Social Media accounts, at:  https://youtu.be/02zR9r-LOfQ.  You can follow them on their USA official links at: Twitter @RareDayUS, Facebook @ Rare Disease Day US and Instagram @RareDiseaseDayUS.  The Worldwide official links are here:  Facebook @Rare Disease Day and Twitter @RareDiseaseDay.  The hashtags that you want to use if you would like to spread awareness via social media are:  #RareDiseaseDay, #RareDisease, #RareDiseases, #1in10, #CuresNow and #NORD.  There is an entire list of ways to get involved right from your own home, bed or recliner; right here at https://www.rarediseaseday.us/get-involved/social-media/#1474047637908-88935dfd-3a29,

The National Organization for Rare Disorders (NORD) are the sponsors of this day and these events. But the participants in “Rare Disease Day” are the National Institutes of Health (NIH), the U.S. Pain Foundation and other patient organizations, government agencies and companies . We also encourage people to plan Advocacy events near their state capital or house to help with issues that are relevant at the state level.  The worldwide theme this year for Rare Disease Day 2018, is much needed research of various rare disorders.  When there is active research being done, it brings people who are ill, the hope they need in order to continue living and trying.