May 6th 2014 Testimony
Hello, my name is Jennessa Lea and I am a resident of North Saint Paul, MN. I am a 27 year old mother to a beautiful 7 year old little girl named Raegan. Raegan and I have a genetic illness called Ehlers Danlos Syndrome, or EDS in short. I have as well have been diagnosed with the following secondary illnesses; generalized hypermobility of joints, Joint pain, arthritis in multiple sites, osteoarthritis in multiple joints, myopia, vitreous degeneration of the eyes, variant migraines, muscle weakness, neuropathy, vitamin D deficiency, raynauds phenomenon, degenerative disk disease, depression, and anxiety. EDS has a great impact on our Musculoskeletal system, digestive system, urinary system, has heart involvement, as well as neurological symptoms. The reason it is so widespread is because we have a defect in our collagen. Collagen is in 90 % of your Body and helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic and therefore weak. Depending on the individual, the severity of the mutation can vary from mild to life-threatening. There is no cure.
Imagine a life where your joints are constantly popping in and out. Yes, dislocating, subluxations and hyperextending. Every step I take my knees go 15 degrees past the point they are suppose to. My ankles wrists, fingers, si joints, neck, elbows and shoulders also hyperextend, sublocate and dislocate. Can you imagine constantly trying to protect your joints because they are so loose they just slip out? For myself and other EDS patients this is our reality. As you can imagine the simplest of things become not so. This is a very debilitating syndrome. I have lost the ability to earn a living due to my illness, lost hope for many years and didn’t care if I lived or died.
Cannabis is the only way I manage my illness and pain because I will not subject my body to the harms of taking narcotic pain medication. No one can realistically live a good quality of life being on long term and high dose narcotics in my opinion and life expierence. The decision to only medicate with cannabis was one of the best decisions I made for myself. Cannabis alleviates pain, is an antioxidant, anti-inflammatory and neuroprotective. Cannabis helps so many of my health issues that steam from EDS and helps control pain! It’s a win-win!
I need to have safe and non criminal access to medical cannabis which includes being able to safely grow my own medicine. Cannabis cultivation was in the bill and was the sole means and only way for indigent MN patients and their caregivers in medical need of Cannabis an easy way to afford the medication they need to stay alive.
Federal Law prevents coverage of Cannabis through Medicaid, Minnesota Care & MN Medical Assistance and patients receiving $400-$957 a month in disability cannot afford $250-$500 a month in medical Cannabis expenses. Then Cannabis cultivation was removed with Legislators scare tactics & misinformation.
I would hate to see all the hard work and efforts leave out a vast majority who would be legally allowed to buy cannabis but for Financial restrictions, cultivation restriction, and lack of insurance coverage would just cause more pain and stress. Pain, disease and illnesses do not discriminate by income. Unfortunately becoming ill is unpredictable and extremely stressful. So stressful and exhausting without the added stress of a financial burden to buy medicine that I can grow myself seems absurd.
I ask you to please add Ehlers Danlos Syndrome to the qualifying list of illnesses that are covered by this bil so we are protected patients as well as the ability to cultivate and grow our own. I Understand peoples concern for cultivating in your own home but I believe we can come to a compromise on this like other states have. I know that I wouldn’t jeopardize my life line that is cannabis to try and grow mass quantities and distribute. We only want a better quality of life, were not trying to make a quick buck. Please see that we are sick patience, not criminals looking to gain a profit. P
Cannabis has gives me hope. When I medicate I have a quality of life worth living. I cannot emphasize how much cannabis has helped save my life. It’s given me hope as I can enjoy life again because I am in MUCH less pain, before medicating this syndrome with cannabis I didn't care if I lived or died, that’s how severe the pain is. Being able to medicate I have a quality of life again