Teen with Autoimmune Disease Backing Bill to Allow Medical Marijuana in Schools

A teenage boy looks at Bill 331 and smiles alongside a government leader
Connor Scheffield, an autoimmune disease patient, is supporting a bill that would allow medical marijuana in Maryland schools

Connor Scheffield, a teen from Annapolis, Maryland, is backing a bill that would allow medical marijuana to be taken at a nurse’s office in Maryland schools. Currently, medical marijuana is banned from school campuses across the state.

Connor says that if it weren’t for medical marijuana, he wouldn’t be able to get through the school day. This is because the teen suffers from a rare autoimmune disease called Gastro-Intestinal Dysmotility.

GI Dysmotility is a painful condition that causes patients to not be able to digest food and nutrients properly and process waste. Dysmotility refers to the abnormal movement of food, nutrients and waste through the GI tract. When the body’s immune system attacks the nerves in the GI tract, transit through the GI tract becomes impaired. Symptoms of the condition include nausea, bloating, vomiting, diarrhea, constipation, abdominal pains, early satiety, and involuntary weight loss. Neurological symptoms may also accompany the disease.

According to Lawrence Szarka, MD, from the Division of Gastroenterology and Hepatology at the Mayo Clinic in Rochester, Minnesota, GI Dysmotility can be disabling. “Patients who have [GI Dysmotility] are miserable,” commented Dr. Szarka. “They have no appetite. They have terrible abdominal pains and constipation. Often these patients undergo lots of diagnostic testing and multiple consultations.”

Like many autoimmune diseases, because GI Dysmotility involves the immune system, nervous system, and digestive system, patients must consult with a team of physicians spanning multiple specialty areas. Furthermore, treatment options are extremely limited, and tend to focus on treating the symptoms, like facilitating gastric emptying, rather than treating the disease itself. And while immunotherapies do exist, some patients who test positive for antibodies don’t always respond to the medication.

Young boy is hospitalized for GI Dysmotility, a disabling autoimmune disease
Connor receives treatment for GI Dysmotility, a rare autoimmune disease

Connor was one of those patients. His father, Michael Scheffield, says that his son tried everything before turning to medical marijuana to find solace, and that it’s the only treatment that’s worked so far. Connor takes it in the form of an oil tincture; he puts just a few drops on his tongue and takes it with a swig a water. “I need it every few hours,” said Connor. “It’s the difference between life and death.”

A young boy in the hospital hooked up to fluids as he undergoes treatment for GI Dysmotility
Connor Scheffield was confined to hospital beds as a child before finding solace in medical marijuana

Prior to using medical marijuana, Connor was confined to hospital beds. Since it’s currently illegal to use the substance at schools in Maryland, he must leave his school every few hours in order to take a dose. It’s also illegal for underage individuals to take medical marijuana without the presence of an adult, so when his parents are out of town, Connor has to go without. On those days, the teen says he can hardly get through a school day. “You can take opioids, you know, painkillers in a nurse’s office,” commented Connor. “But I can’t take my cannabis.”

House Bill 331, dubbed ‘Connor’s Courage’ would allow medical marijuana to be used in a nurse’s office in Maryland schools. Connor is currently one of 200 children who are certified to use medical marijuana in Maryland, and who could stand to benefit from this bill.

To learn more about Connor’s story and his experience with GI Dysmotility, please visit the CBS Baltimore website.

Pop Singer Sia Reveals Battle with Autoimmune & Other Chronic Conditions; Philippines Leader Rodrigo Duterte Says He Has Autoimmune Disease

Pop Singer Sia Reveals Battle with Autoimmune & Other Chronic Conditions

Pop singer Sia recently revealed in a Tweet that she is battling chronic pain as a result of an autoimmune disease and another genetic condition.

In the Tweet, Sia said, “Hey, I’m suffering with chronic pain, a neurological disease, [and] ehlers danlos and I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going,” she wrote. “Life is fucking hard. Pain is demoralizing, and you’re not alone.”

Sia suffers from an autoimmune condition called Grave’s disease, which occurs when the body’s immune system attacks the thryoid gland. This results in hyperthyroidism, which is the overproduction of the thyroid hormone. Without treatment, the disease can result in heart problems like irregular heartbeat, blot clots, stroke, and heart failure, as well as eye health issues, like double vision, light sensitivity, eye pain and vision loss. It can even lead to thinning bones and osteoporosis.

In addition to Grave’s, Sia has Ehlers-Danlos Syndrome, a genetic condition and connective tissue disorder that can affect one’s bones, joints, skin and blood vessels.

Sia’s Tweet has garnered over 170,000 ‘likes’ on Twitter and has many fans responding with well-wishes and sharing their own experiences with chronic illness. One fan tweeted, “We love you so much Sia, you’re not alone either, please take care ❤ sending you lots of love and healing vibes.”

Her Tweet also draws similarities to Jameela Jamil’s Instagram message, in which she also revealed that she has Ehlers-Danlos Syndrome and another autoimmune disease called Hashimoto’s Thyroiditis, which causes hypothyroidism (the opposite of Grave’s Disease).

To learn more about Grave’s Disease, visit the American Thyroid Association.

Philippines Leader Rodrigo Duterte Says He Has Autoimmune Disease

The President of the Philippines, 74-year-old Rodrigo Duterte, says he suffers from an incurable autoimmune disease. The condition, called myasthenia gravis (MG), is a neurological disease that causes weakness in the skeletal muscles, according to the National Institute of Neurological Disorders and Stroke. The disease can also affect eyelid movements, facial expressions, talking, chewing and swallowing.

Myasthenia gravis occurs when the body’s own immune system attacks the neurotransmitter receptors on one’s muscles. This prevents the neurotransmitters responsible for muscle contraction from binding to nerve endings, thereby preventing muscle contraction. This results in the widespread muscle weakness that is the hallmark of this disease.

Duterte believes that he inherited the condition from his grandfather, who had myasthenia gravis as well. “One of my eyes is smaller. It roams on its own,” he said, according to a transcript released Sunday by his presidential office.

Although Duterte appears to be in relatively good health, and myasthenia gravis can be managed with treatment, about 20% of the people with the disease will experience a health crisis at some point in their lives.

To learn more about myasthenia gravis, visit the MG Foundation of America website.

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10 Facts About Sjögren’s Syndrome

According to the Sjögren’s Syndrome Foundation (SSF), Sjögren’s is a systemic autoimmune disease that impacts the entire body, including the eyes, mouth, joints, nerves and major organs. In honor of World Sjögren’s Day, read on to learn 10 facts about this chronic autoimmune condition.

1. It is more common than you think

The SSF estimates that there are as many as 4 million Americans living with the disease, and it’s the second most common autoimmune condition. The exact prevalence of the condition is difficult to determine, however, since the symptoms tend to mimic those of other conditions, such as lupus, rheumatoid arthritis, multiple sclerosis, fibromyalgia and chronic fatigue syndrome. It can even be confused with menopause, allergies, and drug side effects.

2. It mostly affects women

The SSF states that nine out of 10 Sjögren’s patients are women, and the average age of diagnosis is the late 40s. However, the disease can impact anyone of any age, including men and children as well.

3. It causes extensive dryness

Sjögren’s Syndrome develops as a result of the body’s immune system attacking and destroying the body’s exocrine, or moisture-producing, glands. As a consequence, patients experience widespread dryness throughout their body, but especially impacting their eyes, nose, mouth, skin, vagina and joints.

4. It affects the eyes

The disease is often first detected as a result of eye-related symptoms. This includes dry, gritty eyes that feel like sandpaper when blinking and swollen tear glands. Dry eyes can in turn lead to blurred vision, infections, corneal ulcerations and blepharitis. Several of the eye tests that can be used to help diagnose the condition include a Schirmer test, to measure tear production, and a Rose Bengal and Lissamine Green test, to examine dry spots on the eye’s surface.

5. It affects the mouth, throat and nose

Sjögren’s also affects one’s mouth, throat and nasal cavity; the main symptom being dryness. This, in turn, leads to a whole host of other symptoms, such as mouth sores, dental decay, oral thrush (a yeast infection of the mouth), recurrent sinusitis, nose bleeds, heartburn, reflux esophagitis, and difficulty speaking and swallowing. Some physicians administer a lip gland biopsy as a part of the diagnosis process.

6. It impacts one’s joints too

As the immune system destroys the body’s moisture-producing glands, this results in a decrease in synovial fluid, which helps to keep the joints lubricated. This causes inflammatory joint pain and musculoskeletal pain, and can even lead to the development of rheumatoid arthritis, as shown through a positive Rheumatoid Factor (RF) reading in the blood. In fact, the main physicians who treat Sjögren’s are rheumatologists.

7. Neurological problems are also common

Sjögren’s causes a variety of nervous system symptoms, including nerve pain and peripheral neuropathy (a numbness and tingling in the extremities). Other neurological problems include difficulty concentrating and memory loss, often referred to as “brain fog”.

8. The prognosis of the disease varies

Patients may find that their symptoms plateau, worsen, or, uncommonly, go into remission. A French research study published in Rheumatology also found that early onset primary Sjögren’s Syndrome carried a worse prognosis over the course of the disease (‘early onset’ is defined as a diagnosis before age 35). While some Sjögren’s patients experience mild discomfort, others suffer debilitating symptoms that greatly impair their quality of life.

9. It can increase one’s risk of cancer

A German study found that Sjögren’s Syndrome moderately increases one’s risk of developing Non-Hodgkin’s Lymphoma (NHL). NHL is a cancer of the lymphatic system, which includes the lymph nodes, spleen, and other tissues. The lifetime risk of developing NHL by age 80 is 8% among men and 5.4% among women with Sjögren’s. This is compared to a risk of 1.6% of men and 1.1% of women in the general population.

10. There is hope

If you or a loved one has been diagnosed with Sjögren’s, check out the SSF’s video series, Conquering Sjögren’s, and their patient-published Self-Help Booklet. The foundation’s website, www.sjogrens.org, also contains a wealth of resources on the disease, including information about treatment options, survival tips, fact sheets, and even template letters for your health insurance company. You can also check out their extensive network of support groups.

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