After struggling through my 20’s, I was finally diagnosed around the age of 30 with Ehlers Danlos Syndrome. EDS is a genetic disease that effects the connective tissue in the body, with symptoms like Joint hypermobility (loose/unstable joints which are prone to frequent dislocations and/or subluxations & hyperextensible joints), joint pain, musculoskeletal pain, chronic fatigue, migraine headaches, digestive issues, along with a multitude of other subsequent symptoms. For the past 10+ years,
I was prescribed an ever growing myriad of opioid medications to try to combat the debilitating pain I was in. Nothing helped, & in fact my pain just seemed to increase year after year. With my doctor’s guidance I slowly reduced & removed all of the opioids I had been taking & am now just over 1 year opioid-free! My pain is pretty much the same as it was when I was taking the opioids, but at the same time, I am feeling much better ...I have less occurrences of brain fog & my quality of life has simply improved! I have now had 2 specialists call me a “victim of big Pharma”. I know my doctors were only trying their best to HELP me, & they did what they were taught to do. It’s wonderful that we’re now learning more about opioids & chronic pain conditions, but that still doesn’t bring back the last 10 years of my life… my child-bearing years.
Over the years, I’ve made other EDS friends that I usually see annually at an international EDS conference. I’ve witnessed noticeable improvements in several people & when I ask them WHAT it is that they are now doing differently, inevitably it is that they live in a state or country where medical cannabis is now approved & available for use! I’ve had so many conversations with people that have my same disease, & whose pain, fatigue, & overall quality of life have improved DRAMATICALLY by introducing medical cannabis into their lives! We all live in this SAME United States of America, & I am only asking for the same access to these medications that I’ve seen so many others benefit from, by simply residing in another State.
My name is Craig Miller and I’m what you refer to as a caregiver, I guess. I wish I could just be considered a husband and hopefully one day a father.
My beautiful wife Debbie has a genetic disease called Ehlers-Danlos Syndrome. “EDS” is a collection of heritable connective tissue disorders. Either directly or indirectly, Ehlers-Danlos Syndrome is known or thought to alter the biology of collagen in the body (the most abundant protein), which can lead to multi-systemic symptoms.
What this means in Debbie’s case is that her joints are not stable and her tissues are very fragile. She dislocates or subluxes things like her ribs regularly. She wears braces on her fingers so they don’t dislocate doing simple things like writing. Just a bit of pressure anywhere on her body can result in bruising on her skin. It’s been a painful existence for her most of her life. Most people couldn’t deal with the pain and fatigue she deals with daily.
Now what it means for me is I have to watch someone I love suffer every day. The past decade has been particularly rough for us. Her good days were getting fewer and fewer and I had no idea how to help my wife. Medical bills piling up, getting behind on all of our other bills. Making sure I had a job that paid decent and had good insurance. It’s a pretty helpless feeling not knowing what to do or what to say or what not to say. How could I know? I can’t walk in her shoes, I can’t feel her pain all I can do is watch her suffer.
I’ve had people tell me I’m a “good man” for staying with her, which I don’t really understand. I love my wife. That’s why I “stay”. I remember saying to her “in sickness and in health, for richer and for poorer.” I made a promise to love her forever and I plan on keeping that promise.
Has it been hard at times? Can I do better taking care of her?, absolutely, but we’ve made it together so far and we’ll keep moving forward fighting for the right for her to use medical cannabis. We know medical cannabis can help Deb. We’ve met many people in the EDS community that live in states with medical cannabis laws and they are doing amazing. Many get completely off of pharmaceuticals using only cannabis based medications. Every sick or dying Iowan should be afforded the opportunity to use whole plant medical cannabis. Please help my Debbie and thousands of other sick Iowans. Get involved and speak up to our local, state and federal legislators.
My Disease, Ehlers-Danlos Syndrome with type 3 Hypermobility does not produce collagen in my body.
I have been on Vicoden for over 10 yrs now and have tried over 20 different medicines that did not work due to not helping or allergies to them.
I wear knee braces, back braces, wrist braces and one for my thumbs because they also pop out along with my toes when I walk.
I have to wear a waist cincher when it's not bad enough for the back brace. I have popped out my pelvic bones, hip bones, elbows, shoulders and my neck. Anything that can pop out it has - even my ribs.
I also suffer from Migraines, Fibromyalgia, Spondololisis, Vertigo and Arthritis, IBS and now have Small Posterior Osteophytes growing on c5 and c6 of my neck.
I deal with pain every single day. Three years ago, I had to close my business of 10 years because of the pain and dislocations. I will say the older I get the worse I hurt.
I was born with severe orthopedic issues, having my first reconstructive surgery at age 5. I have had two others, and will have at least two more as things progress.
I have Ehlers-Danlos Syndrome: hypermobility disorder. While I have never known a pain free life, I did not start taking regular pain meds until about two years ago at the age of 50. I think when you're born being accustomed to pain and discomfort, you develop a pretty high pain tolerance.
On the other hand, I have a fairly low tolerance for medication, so, I only take them at night to sleep. If I took them during the day, I wouldn't be able to function.
I'm hoping that sometime in the near future, the state of Iowa (and even the nation) will realize that medical cannabis is a viable alternative to other stronger, addicting and damaging medications.
I have no idea if it would help me, but I should be given the opportunity to find out. There is such a stigma surrounding cannabis, a by-product of decades long "war on drugs". A war that won't be won, no matter how hard we try.
Regardless, there are thousands of people out there who could benefit from medical cannabis. Many, like myself, who have zero interest in the "high", but instead are suffering with a variety of conditions that could be better treated with medical cannabis than the host of pharmaceuticals they have been given over the years.
Hello, my name is Cindy Walker. I have Hypermobile Ehlers-Danlos Syndrome, Chronic Fatigue, Fibromyalgia, Irritable Bowel Syndrome, and other problems due to the HEDS. I would like whole plant access to Medical Cannabis in Iowa because of all the research that proves Cannabis works for neurological and gastrointestinal issues as well as pain and fatigue. People should not be denied medicine that works with little to no side effects and zero fatalities.
Patient & Caregiver Stories
These stories represent real Iowans suffering from complex medical conditions that need access to medical cannabis right here at home.