I was introduced to this non-profit though my father and, curious, went about some research to find out who they were and what they promote. That’s when I met Ashley. At 16 she, suffering from RSD, founded Rock Out to Knock Out RSD Inc. to help others. The weight of this post is heavy indeed, and I am humbled by the depth of the struggle. I find myself at a loss for words, and its because there are none. From Ashley:
Q: What does RSD stand for and who does it affect?
A: RSD stands for Reflex Sympathetic Dystrophy, presently more commonly known as Complex Regional Pain Syndrome (CRPS). RSD is a chronic neurological pain condition that typically is brought on by an injury (i.e. surgery, broken/sprained limb). Symptoms may include intense burning, bone crushing, electrical, and stabbing sensations, swelling and discoloration of the affected area, skin temperature changes, increased sensitivity to physical stimulus (touching, vibrations, etc. cause pain), and more. On the McGill pain index, RSD (“Causalgia” is another term for RSD/CRPS, all one and the same) is rated as one of the highest pains. It can affect people young and old, of any gender, race, ethnicity, etc.; it does not discriminate.
I have had teachers, friends, family, doctors, and nurses treat me very badly because of RSD.
Q: You founded Rock Out To Knock Out RSD when you were 16. Can you tell us a little about what you had to overcome on your journey?
A: When you’re diagnosed with an under-recognized health condition, people tend to judge before they take the time to learn about it. I have had teachers, friends, family, doctors, and nurses treat me very badly because of RSD. When I was younger, my peers would say, “You are faking it”. They would even go as far as touching my RSD limb purposefully. Sometimes when a doctor didn’t have the answers as to what was wrong, they would say, “it’s psychological” ,”it couldn’t be that bad”, and would tell me that there must be something wrong at home or at school. These situations still happen all of the time to RSD/CRPSers of all genders and ages. This is why awareness is so very important to Rock Out To Knock Out RSD. When I was 16, […] I approached my parents one day and explained that I wanted to do something about it; they said they were behind me 100 percent. It can be hard running a non-profit, especially when it’s for a condition not many people know about. People have a hard time understanding RSD and don’t tend to donate as often, but you have a deeper connection and understanding for those you are trying to help. Although it’s difficult, with the help of my Mom, Dad, brother and very close friends, we have been able to help people all over the world.
…The pain of RSD is enough to drive anybody out of their mind but what I admire is the fact that RSD patients still keep their sanity… – Dr. H. Hooshmand, M.D., P.A.
Q: This is an issue close to you, but it can be removed for those who haven’t experienced it firsthand. When were you diagnosed with RSD? How does it affect your daily life?
A: When I was diagnosed with RSD, I was 11 years old, though my symptoms started years earlier. It took many doctors and specialists before anyone had an idea of what was happening. Once I was diagnosed, it was nice to finally have a name to what was causing havoc to my body, but at that time, there was so little known that it was near impossible to find anyone to treat me. Living life with RSD is a life changer for most. For those who are diagnosed young, we did not get to experience much in life before being diagnosed, so we lose what “could have been” without RSD, and those who are diagnosed later in life see all that they lost and could be doing, or was once able to do but can’t anymore. I think it is this way with most chronic illnesses though (check out the spoon theory if you have a chance; it’s a great explanation that fits most chronic illnesses). There are certain things we may need to avoid to be able to have a halfway normal life; such as the cold, vibrations, crowded areas (in order to not be bumped, getting bumped can make pain much worse), areas with wind and much more. Some “normal” things such as showers, were once taken for granted, are now things that are more-so planned out. RSD is not always a “visible” condition, we don’t necessarily look “sick”. While we may feel like the affected area is actively ablaze like a forest fire, feeling like we’re being electrocuted, etc., no one can see it. This can lead to a difficult time with our family, friends, peers, employers, and even those in the medical field, not understanding the pain we are in. The disbelief, lack of understanding and compassion, the belittling and judging, can sometimes be one of the worst parts of it all. The immense amount of pain causes you to lose concentration, sleep, and drains your energy (on top of not sleeping). Plans are usually penciled in, because our pain and energy levels are so unpredictable, we may have to break plans at the last minute (often), which makes us feel horrible. Although it is often difficult to accept, we learn to adapt from our former “normal” lives, for example we learn what out what our new limits are, what will make us better, what makes us worse, etc. My life has been put on pause several times because of RSD, but I still try to concentrate on the things I am able to do. On the positive side, you meet amazing people from all over the world that you may have never met before (thank you internet and social media).
Q: What does Rock Out To Knock Out RSD provide for those affected?
A: “Rock Out To Knock Out RSD, Inc. is a non-profit organization devoted to strengthening the RSD/CRPS community through awareness, individualized support, and much needed research.” RSD (aside from the pain) can be an isolating condition. Although the medical community is becoming more educated about it, it is still very unheard of elsewhere, much like Fibromyalgia was not too long ago. Often, once someone is diagnosed, they may feel alone because they’ve never heard of anyone having RSD. One of our main goals, included in awareness, is to let those who are newly diagnosed, or even those who have had it for years, know that they are not alone, that there are others going through the same experience. We have sent out over 300 specially picked super soft teddy bears to RSDers who are having a rough time, or who may just need a smile and reminder that they aren’t alone. We also have a Comfort Basket. The Comfort Basket consists of $200 worth of everyday items the recipient may not be able to afford for themselves, soft and comforting items, as well as some fun stuff. We have helped purchase durable medical needs (and other medical necessities), assisted with funding a service dog, donated to research programs, and more. In any way, currently or in the future, all proceeds go directly back into the RSD community.
Q: How can someone become involved with Rock Out?
A: We are a completely volunteer based non-profit. This is one of the major reasons I wanted to start my own non-profit. I wanted to make sure that the money that was raised and donations were/are directly benefitting those who need it. We are always looking for volunteers to help spread awareness about RSD / CRPS, and like other non-profits, donations are always welcome. More volunteer opportunities become available surrounding our events. For more information, we can be reached at firstname.lastname@example.org, or check out our website: RockOutRSDInc.org
Q: Tell us about how the carshow and concert went!
A: The October car show and concert was great! This was one of the biggest we have done so far. The parking lot between The Original Roadhouse Grill and Chuy’s in Bakersfield, CA was filled with beautiful cars, vendors, rockin’ bands, and of course, people! Considering how many other organizations holding car shows elsewhere decided to hop on the bandwagon for that beautiful weekend, the turnout was great. For every person who presented a dining donation flyer\coupon on the day of the event, The Original Roadhouse Grill donated 20% of every bill.
Q: Is there anything, related to RSD or not, that you would like to leave our readers with?
A: Thank you for taking the time to learn about RSD / CRPS. One word can turn into a million and one day we hope to reach all that suffer and let them know they are never alone.
For more information, see Rock Out to Knock Out RSDs website Here or Facebook Here. They are always looking for volunteers for their carshow, graphic and web designers, bands, etc. Simply being aware of this quiet war is gainful in helping those affected.
After all of this, I realized how much of an effort it is for Ashley to run this non-profit. To find the strength to help others find theirs. When getting out of bed, dressing, and eating can be monumental tasks, it is humbling to see her make the effort to help others. Thank you for that Ash. Welcome aboard.