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.
This is Abram! He was born with a rare gene mutation called UBE2A Deficiency Syndrome. This gene mutation has caused him to have epilepsy, brain malformations including a pineal cyst and cortical dysplasia, autistic-like behaviors, absent speech, malformed kidneys (horeshoe kidney), hypotonia, diastasis recti, and an intellectual disability.
As a newborn, he never stopped screaming and we knew right away that there was something wrong with our sweet baby. At first he was misdiagnosed as "colicky" or having "acid reflux" but it turned out to be something far more sinister: subclinical seizures.
For months my son suffered from non-stop generalized seizures that were firing from one side of his brain to the other. He never slept, he rarely stopped screaming and then one day he stopped making noise altogether. The doctors told us not to worry - that he was simply concentrating on learning how to crawl.
Soon, he was globally developmentally delayed and just before his first birthday, they found a large pineal cyst in his brain and within months physical seizures began to present themselves including abscence and complex partial seizures. Genetics had no idea what all of his symptoms met but we were constantly told that what was happening to our son was the cause of a larger underlying genetic condition. We were relieved when we finally got our answer in December 2015 of an official diagnosis of a UBE2A gene mutation.
We got lucky as we had a Neurologist tell us about Cannabidiol pretty early on in his diagnosis. After a couple of scary hospital stays, we were told to go to CO to try it and eventually (after failing two AEDs) we obtained CBD and the rest is history.
Our son is over a year-and-a-half SEIZURE FREE on an organic cannabis oil from CO and is doing quite well. It has had surprising side effects including a major change in his Sensory Processing Disorder, he went from border-line failure to thrive to actually eating and being a bit chunky, his generalized seizures are now just independent discharges without seizures, his cognition has increased and now - at age 4 - he is in an inclusive pre-k classroom with a 1:1 aide and is finally able to BE a little boy.
My son's seizures are held at bay for now but as he grows, I worry that we won't be able to afford the oils at the ratios that are legally available to us with our current law. We still struggle with self-harming behaviors (head banging, punching, slamming himself around in bed) and we have seen these issues change immensely for children in states that have access to other cannabinoids including THC, CBN and THCa.
Our doctors should be making these choices for us, not our legislators. When you have a child with a medically complex issue, the medical professionals are literally learning from your family. We have joined Medical Research Programs at the Mayo Clinic, The University of Iowa and The University of Chicago because our son's condition is so rare.
If Abram's story of cannabis use helping his seizures due to brain malformations can help another little boy overcome the hardships of this diagnosis, our struggles and our fight to change medical cannabis laws is worth it.
Please let your Legislators at the state and federal levels know that you support medical cannabis and help us change these laws. There is always hope for families in situations like mine and cannabis happened to be our beacon in the dark.
You can follow his story here: http://ourabrammayhem.weebly.com/
My name is Gail Orcutt. Although I’ve never smoked, I was diagnosed with lung cancer in 2010. Now I know that anyone can get lung cancer especially if they are living with an unacceptable level of radon in their home. (70% of Iowans do.)
In 2010, my entire left lung was removed and then I endured 12 weeks of brutal chemotherapy. I was told that I was cancer-free and there was a 90% chance that I was cured. No such luck; three years later, the cancer had metastasized to my left hip. Two different kinds of radiation were used, but just this summer, the cancer reared it’s ugly head again in that hip. Now I take a targeted chemo pill that costs my insurance company $14,167 a month!
I’ve done the research. Cannabis can kill cancer and keep it from spreading. I do everything I can to stay healthy: diet, supplements, meditation, teaching others about radon, but I’m not allowed to use a natural medicine. My physicians aren’t allowed to mention it. I want the state of Iowa to legalize the use of medical cannabis in all of its forms so that my physicians and I have a choice when deciding on my course of treatment.
The use of medical cannabis should be a decision between me and my medical team without any interference from the state legislature. No one deserves cancer, and no one should be denied this option for an improved quality of life!
I suffer from a neurological condition called Charcot-Marie-Tooth disease. It causes severe neuropathy, muscle atrophy, muscle spasms, and bone deformities. I was on a laundry list of pharmaceutical opiates for a long time and suffered a cardiac arrest because of them four years ago,
My greatest fear is suffering another cardiac arrest and not surviving. Continuing to be forced to live with the constant threat of another one is very inhumane.
Things need to change so myself and fellow Iowans can have safer, more effective treatment options available to them."
Quincy Hostager, age 12, is from Des Moines and started having seizures in 2002 at 5 months. Quincy’s mom, Maria, owns a small business in real estate in Des Moines, and father Dan coaches at Drake University. Both went to Iowa colleges and have spent much of their careers in Iowa. They do not use marijuana or any illegal drugs.
Children in the US are finding relief from seizures from CBD-rich cannabis taken in oil or pill form. Some children and adults are finding seizure-control from cannabis that contains higher THC. Five children in Australia are seizure-free from a cannabis tincture that contains THCa. For faster rescue medication or to stop seizures, parents are vaporizing the cannabis or rubbing the tincture on the children’s gums.
The US Government filed a Patent on cannabis called Cannabidiol! US Patent 6,630,507 as Antioxidant, Antiinflammatory, Neuroprotectant, good for Alzheimers and Parkinsons.
Quincy developed normally until age 2—he lost the ability to talk and walk after 4 doses of Depakote, a common antiepileptic. He spent 10 days at Mayo where they gave him versed, Ativan, morphine, Topomax, and performed extensive testing. These drugs only caused further seizure activity and suppression to his central nervous system. He relearned to walk after a year, but still hasn’t spoken.
Quincy has tried and failed over 20 Antiepileptic Drugs, including high-dose dangerous Steroids, high-fat Ketogenic diet, he has had surgery for a pacemaker, the Vagus Nerve Stimulator (VNS), IVIG transfusions, Dangerous non-seizure drugs (morphine, beta blockers, dopamine, baclofen, Zoloft) He wears a helmet, and spends a lot of time in the wheelchair due to seizures and weakness from his current drug, Vimpat.
Quincy’s family is trusted with controlled substances and they have never fallen in the wrong hands. Prescription Drug FDA approved side effects: liver or kidney damage, ataxia, aggressive behaviors, constipation, muscle weakness, nausea, weight-loss, vomiting, kidney stones, vision problems, extreme insomnia, dystonia.
Cannabis side effects: sedation, short-term memory issues, a feeling of relaxed euphoria (decrease in motivation), and appetite increase. Israeli and other governments provide cannabis to patients for free. If Quincy lived in one of the US 28 states where it was legal, he could use this without fear of criminalization.
Our friend would like to remain Nameless and Faceless. With Iowa's current bill only covering those with intractable epilepsy, it leaves out so many of Iowa's sick and suffering. We get messages every day from people who need help and are scared to come forward, due to fear of arrest for doing what is best for their medically complex health condition.
My story begins six years ago, when I was diagnosed with Crohn's Disease. My gastroenterologist told me then and has said since that mine is the most severe case he's ever seen. Nothing seems to be able to help very much, only prevent this progressive disease from getting much worse. I am considered disabled because of it, and spend a lot of time in the restroom despite being on steroids (prednisone), an infusion biologic therapy (entyvio), and immune system-suppressants (azathioprine).
I have tried changing my diet, even meeting with a registered dietitian for an extended period of time, to no avail. I have been hospitalized for Crohn's complications more times than I can count, with ER visits and urgent care visits becoming more and more frequent. I have learned that hospitalization does not even improve my condition but can only treat the symptoms such as dehydration and vitamin deficiencies, as even in the hospital my symptoms are severe and the doctors seem to be at their wit's end.
I get extremely painful abscesses and fistulas as well, and the doctors do not even try to fix these with surgery any more since they seem to just come back eventually, and I am told with Crohn's Disease they won't heal correctly with surgery either.
I have read a great deal of the research and anecdotal evidence of successfully treating Crohn's Disease with a plant, success beyond the reach of current pharmaceutical interventions such as immunosuppressants and steroids. I know that Crohn's Disease is currently incurable and can only be managed, but it is very frustrating to me that I must suffer and continue to get progressively worse because a plant is illegal that can help cause healing from this inflammatory condition.
I read with great hope, for myself and others, the success stories of others in other states who have been lucky enough to receive treatment currently deemed illegal in Iowa. I believe it is unethical to withhold this potentially life-changing treatment from myself, fellow Crohn's sufferers, and other Iowans who are suffering and not able to live up to their full potentials.
Thank you for reading my story.
Allow me to introduce myself! My name is Amanda, and I am the married mother of 3 beautiful children. I am also a registered nurse who specializes in labor and delivery.
About 7 years ago, I developed some very significant medical problems. After 4 years of struggling to figure out what was wrong with me, I had an episode where the entire right side of my face went numb. Soon after that, I was diagnosed with Multiple Sclerosis. Like always, I was put through the wide array of testing, and prescribed a total of 17 different medications. Some of them helped a little, and some not at all.
The spasticity in my legs was so bad sometimes that it was hard to bend my knees. I was living in constant agony. I had to give up my job as a labor and delivery nurse because I could barely function anymore, and my children began to see a mother that they didn't even know. I couldn't get out of bed because my pain was so bad that I couldn't walk. My husband had to help lift me out of the bath tub when I was in too much pain to do it myself. I was ready to give up.
My name is Amanda, and I am a closet criminal. I can't give you more details about myself, because I could risk losing my children, or going to jail. Why? Because I use cannabis to treat my multiple sclerosis. When I was at the end of my rope, a friend suggested that I try cannabis to help with my pain. At that point, I was willing to try anything, and my life hasn't been the same ever since. Today, I am a vibrant young mom again.
Yes, I still have my bad days. Cannabis isn't a cure for multiple sclerosis, so I will always have some symptoms. But I am living again. I am even traveling again! Cannabis gave me my life back. I take a total of 3 prescriptions now. THREE! And my spasticity is less than a quarter of what it used to be.
Unfortunately, due to our current laws, I have to be a "criminal". I have to risk everything just so I can live a normal life. I want to shout from the roof tops how much this medication has helped me. I am hopeful that one day very soon, our politicians will listen to us, and I won't have to worry any more. But until then, I will have to remain a closet "criminal" so that I can live my life and raise my children.
Thank you so much for taking the time to read my story.
My name is Patrick Loeffler. I'm 50 years old and I have Intractable Epilepsy. I was diagnosed with epilepsy 3 years ago but I truly feel it's something I've had all my life. Since my grand mal seizures have started 3 years ago I have tried 5 different seizure medications with varied results. I have had some of the worst side effects you can describe known to a man. By saying I have had Epilepsy all my life I mean I have been undiagnosed my entire adult life. My recreational love and usage of Cannabis was for good reason. My life.
My recreational use was actually self medicating unknowingly. 9 years ago I received a new job of authority. I truly stopped recreational smoking and that's when my issues and seizures became prevalent. I was having a seizure from the right side of my brain and it was then stopping my heart. 12 different times, with 18 seconds being the longest pause. The next day was my pacemaker. Then the Mayo Clinic was able to determine my seizure was stopping my heart after that.
Going through the 5 different seizure medications led my Neurologist to recommend me a CBD Oil card. Great! Only problem, I cannot get the CBD Oil that controls my seizure activity in the state of Iowa. I have been using a CBD Oil that I acquire that is a 3:1 ratio. 3 parts CBD and 1 part THC.
To date I am off 2 heart medications, 2 diabetes medications, 5 different seizure medications, down 90 lbs, driving myself and I have my quality of life back. I attribute this entirely to my education, respect and medical usage of Cannabis for my quality of life!
Revelations 22:2 "....and the leaves and trees are for the healing of the nation."
My name is Connie slayton Norgart and I'm 62 years old. I contracted polio at age 6 months and post polio syndrome in 1989. I have more weakening in all my muscles and severe muscle pain. I wore braces while being a nurse for 36 years. I've been on opioids since 1989 with 2 near death experiences due to side effects. I started using cannabis a few years a go for the pain and I have gotten great results. I only take 2-4 pain pills a day compare to eight pills daily. If I could get cannabis on a regular basis I would have no need for the opioids. I have 2 children and 2 grandkids with another on the way! I love to garden camp and spend time with my family. I volunteer at the veterans hospital. I'm far from being a criminal. This medicine really does give pain relief and can do much for many other illnesses. We have the right to manage our healthcare. Please contact your Iowa legislators.
This is Autumn! Autumn is almost 4 years old and had a traumatic birth that lead to brain damage which has caused a seizure disorder called Lennox-Gastaut Syndrome (LGS), spastic cerebral palsy, microcephaly, vision and hearing impairments.
Autumn has been taking CBD oil for 2 years. Since starting CBD oil Autumn is less spastic, no longer has week long crying spells where she would cry 240 hours, she is happy, learning, her vision and hearing are improving and she is saying mom!
I have used her CBD oil to treat an ear infection that typically requires her to be on strong antibiotics. The oil cleared her infection up in 5 days! I have also used her oil to treat a pressure sore on her heel that should have taken months to heal but only took 3 weeks !
Autumn has always been on multiple seizures meds. I am currently weaning her meds hoping to get her pharma free! She has successfully been weaned from Keppra which she had been on since birth! Her next wean will be Topamax. Without CBD oil Autumn would still be a crying zombie with no quality of life! Thanks to CBD oil I now have a happy, active, full of life child!
Patient & Caregiver Stories
These stories represent real Iowans suffering from complex medical conditions that need access to medical cannabis right here at home.