Endometriosis linked to common autoimmune diseases

Endometriosis image courtesy of: The Endometriosis Foundation of America

A group of Italian researchers based out of Sapienza University in Rome have discovered a link between endometriosis and several common autoimmune diseases.

According to the Endometriosis Foundation of America, endometriosis is a menstruation-related disease that primarily affects women in their reproductive years. The disease occurs when tissue similar to the endometrium (the lining of the uterus) migrates outside of the womb, where it shouldn’t be. This results in a variety of symptoms, including inflammation, severe cramping and pain, long, heavy periods, and infertility. It can also cause other symptoms, such as nausea, vomiting, bowel and urinary disorders, chronic fatigue and pain during sexual activity.

The exact cause of endometriosis is poorly understood. While many theories have been suggested, this study investigated the prevalence of common autoimmune diseases among Italian women with endometriosis. The study compared 148 women with endometriosis (the case group) to 150 who did not have the condition (the control group). The women in the study ranged from 18-45 years of age, and those who had endometriosis suffered from varying degrees of the disease.

The study found that in the case group, there was a ‘significantly higher’ prevalence of autoimmune diseases such as systemic lupus erythematosus (SLE), celiac disease, and Hashimoto’s thyroiditis, as compared to the control group not affected by endometriosis. Inflammatory Bowel Disease (IBD), however, was not found to be linked with endometriosis.

The main limitation of this study is the small sample size. Further studies must be done with a larger group in order to prove that autoimmune activity is responsible for the development of endometriosis. However, this study is helpful for physicians to consider the possibility of autoimmune conditions that may be co-occurring in patients with endometriosis.

To learn more about endometriosis, visit the Endometriosis Foundation of America website.

This blog post is dedicated to Jenni Rempel, a classmate of mine who passed away from endometriosis four years ago. Before she passed away, Jenni produced this video to educate others about this painful disease: Help Me Get My Life Back from Endometriosis.

How Chronic Illness Can Kill Your Self-Esteem

Chronic Illness and Self-Esteem

I recently read a post on Reddit on the r/autoimmunity subreddit titled ‘Losing Everything‘. In the post, the author describes being diagnosed with Sjogren’s Syndrome, an autoimmune condition affecting one’s moisture-producing glands. The author has also been living with other autoimmune diseases, including Graves’ disease, Hashimoto’s Thyroiditis and Granulomatosis with Polyangiitis (GPA), for quite some time.

She goes on to say that since being diagnosed with these conditions, she feels like she is losing everything that makes her ‘herself’. For example, she is an artist, but she has lost the use of her dominant hand as a result of her conditions, leading her to quit her art. She also had a unique style, with beautiful thick hair and piercings. However, most of her hair has now fallen out and she had to remove her piercings due to constant infections.

The author’s post made me think of my own struggle with chronic illness and how having Sjogren’s Syndrome, Hidradenitis Suppurativa (HS) and Benign Fasciculation Syndrome (BFS) has impacted my sense of self.

Although I have both good days and bad days, I often resent my body and these diseases for what they have ‘taken away’ from my life. I often think to myself, what would I have accomplished by now had it not been for this disease? Would I be further along in my career? My education? Would I have more social connections and deeper friendships? It’s hard to quantify, but I feel like my life would have been very different had I not developed autoimmune issues. In other words, I don’t feel like I can be my true ambitious self because of my chronic illnesses.

I could also relate to the author’s mention of her outward appearance, like her hair and piercings. I notice that I often think ‘why bother?’ when it comes to things like fashion and beauty, which were important to me before my diagnosis. I think this is because I’ve adopted the mindset that I am ‘diseased’, so why bother to look nice? This is definitely a negative mindset that I’m continuing to work on, but, I think it’s important to acknowledge how chronic illness can impact your sense of self- whether it’s your own self-image, or even your outward appearance.

I also recently read a powerful testimony on The Mighty by Megan Klenke titled, ‘How Chronic Illness Can Drastically Affect Your Self-Esteem’. In her post, she describes the shame that many individuals with chronic conditions and disabilities face, such as having to ask for help to do tasks that they once did independently, using a wheelchair, or dealing with embarrassing side effects of medications. Furthermore, Megan also points out that simple things like missing family functions or get-togethers with friends as a result of illness can make one feel left out and like an ‘awful’ family member or friend.

A YouTuber I follow named Samantha Wayne also created a video detailing her struggle with the impact of lupus on her self-image. She ended up being hospitalized and had to take time off to rest. During this time, she says she felt useless and like she wasn’t doing enough. Also, she had to step back from her job because being on her feet all day was taking a toll on her health. The medications she was taking, such as prednisone, also impacted her outward appearance.

Samantha did say that leaning on her support system has helped her to get through negative feelings about her self-worth. She also says that realizing that everyone is worthy, regardless of their health status, has also helped. Furthermore, she says that while her disease caused her to lose certain hobbies, like competitive basketball, she was able to adopt new hobbies and learn new skills such as video blogging on her YouTube channel, which she started in order to raise awareness about lupus. Finally, she says that practicing gratitude for the things she can do and what she has is another way that has helped to overcome her low self-esteem.

Has having a chronic illness impacted your self-confidence, and if so, how have you handled it? Let us know in the comments below!

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Top News in Autoimmune Disease – October 20, 2019

Evidence of autoimmune response in patients with autism

Autism impacts 1 in 59 American children by age eight and can seriously impair social skills and communication, and lead to repetitive behaviors and restricted interests. For the first time, a team of Boston, Massachusetts-based physicians and scientists have published a report detailing evidence of an autoimmune response against brain cells in patients with autism.

Matthew Anderson, MD, PhD, was the lead researcher in the study. His team analyzed brain tissues donated through Autism BrainNet, a non-profit tissue bank, and noticed that over two-thirds of the brains examined contained three uncommon characteristics.

Firstly, they noted the accumulation of immune cells surrounding blood vessels in the brain (called perivascular lymphocyte cuffs). Secondly, they found that there were bubbles or blisters (that scientists call blebs) accumulating around these blood vessels. Finally, upon further examination, they found that these blebs contained debris called astrocytes.

These findings are evidence of an autoimmune response and chronic inflammation in the brains of patients with autism. The scientists also compared the autistic brains to those of non-autistic donated tissues, and the presence of these findings in the autistic patients ‘significantly surpassed’ that of the control cases.

Although this study does not definitively prove that autism is an autoimmune disease, it is a first step in finding evidence of an immune response for this neurological condition. Anderson compared his team’s findings to research that multiple sclerosis (MS) is an autoimmune disease caused by the immune system’s destruction of the nerves’ myelin sheath.

To read more about this astonishing study, click here.

Family of woman with scleroderma seeks financial support

Yesenia Garica, 25, of Newhall, Santa Clarita, California, first began experiencing debilitating symptoms five years ago. However, it took years for her to get a diagnosis of scleroderma – an autoimmune condition that primarily affects the skin.

Symptoms of scleroderma include hardened and thickened skin, ulcers and sores on the skin, joint pain, muscle weakness, intolerance to cold, high blood pressure, blood vessel damage, and scarring of the lungs.

Yesenia has been hospitalized six times and had surgery three times this year alone. As a result, she now weighs a mere 74 lbs. Unfortunately, her health insurance does not cover the medication that she is taking to treat her symptoms. As such, her family has set up a GoFundMe campaign so that Yesenia can continue to take the medication and to cover specialized treatment at UCLA. So far, the campaign has raised $4,700 out of the $10,000 goal.

To learn more about Yesenia’s condition and to contribute to her GoFundMe campaign, click here.

Top News in Autoimmune Disease – October 8, 2019

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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Top News in Autoimmune Disease – Sept. 22, 2019

Kim Kardashian West gets an ultrasound of her hand, leading to a ‘painful and scary’ diagnosis.

Kim Kardashian West Discusses ‘Painful and Scary’ Autoimmune Diagnosis

Celebrity and business mogul Kim Kardashian West discussed her recent autoimmune diagnosis on an episode of Keeping Up with the Kardashians. During the episode, Kardashian West visits a doctor with symptoms including pain, swelling and stiffness in her joints. She already has an autoimmune condition called psoriasis that causes red, flaky and scaly patches to appear on her skin, which she had developed at age 25 after catching a cold. Now, at age 38, she was informed that her psoriasis has morphed into psoriatic arthritis.

According to the National Psoriasis Foundation, 125 million people worldwide suffer from psoriasis. Furthermore, it’s estimated that 1 in 5 individuals with psoriasis will develop psoriatic arthritis in their lifetime.

Kardashian West said that her symptoms, including joint pain in her hands, got so bad that she was unable to even pick up a toothbrush. An initial blood test she took came back as positive for lupus and rheumatoid arthritis, but it was later shown to be a false positive after a review of her symptoms and getting an ultrasound of her hands.

Despite the harrowing diagnosis, Kardashian West is maintaining a positive attitude, saying “It’s still painful and scary, but I was happy to have a diagnosis. No matter what autoimmune condition I had, I was going to get through it, and they are all manageable with proper care.”

The star also bonded with fellow beauty mogul and fashion model Winnie Harlow, who has an autoimmune condition called vitiligo. As she revealed during a recent interview with Jimmy Fallon, Kardashian West spoke to Harlow for over an hour to get her ‘opinion and advice’ on her autoimmune diagnosis.

To learn more about psoriasis and psoriatic arthritis, visit the National Psoriasis Foundation website.

J.K. Rowling has made a multi-million dollar donation to fund MS research, at a clinic named after her late mother

J.K. Rowling Donates Millions to Fund Multiple Sclerosis (MS) Research

J.K. Rowling, renowned author of the Harry Potter book series, has made a generous donation to fund Multiple Sclerosis (MS) research in the U.K.

Her donation, in the amount of 15.3 Million British Pounds (equivalent to $18.8 Million USD), will be used to construct a new facility for the Anne Rowling Clinic at the University of Edinburgh, which is dedicated to MS research.

The Anne Rowling Clinic was established at the Scotland-based university in 2010, when J.K. Rowling had made another generous donation to fund MS research. The clinic was named after her mother, who suffered from MS and passed away due to complications from the disease at the young age of 45.

Rowling has said that she is immensely proud of the work that the clinic has accomplished, and that they are providing “practical, on the ground support and care for people with MS.” The University’s Vice Chancellor, Professor Peter Mathieson, also commented, “We are immensely honored that J. K. Rowling has chosen to continue her support for the Anne Rowling Regenerative Neurology Clinic. This inspiring donation will fund a whole new generation of researchers who are focused on discovering and delivering better treatments and therapies for patients.”

To learn more about the Anne Rowling Clinic and to view a video of their important work, click here.

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Actress Jameela Jamil Describes Life with Autoimmune Disease

British actress and model Jameela Jamil struggles with daily living with two chronic illnesses, including an autoimmune disease.

British actress and model Jameela Jamil took to Instagram this week to describe her struggle of living with an autoimmune disease. The 33-year-old suffers from Hashimoto’s Thyroiditis, an autoimmune disease in which one’s immune system attacks the thyroid gland, causing hypothryoidism (an underactive thyroid). This, in turn, can lead to symptoms such as weight gain, fatigue and depression.

Jamil wrote, “Living with an autoimmune condition is a real pain in the arse, and it irrationally makes you feel like a failure for not being able to “live it up” like other “normal” people. Shout out to all of us who struggle with this, and go through all of the incredible shitty days, and make it through each one. Even if it’s just by the skin of our teeth. We are LEGENDS for our strength of character.”

In addition to Hashimoto’s, Jamil also revealed that she has Ehler’s-Danlos syndrome (EDS) type 3. While this chronic illness is not autoimmune, in causes various painful symptoms, such as joint hypermobility, loose joints, poor wound healing and easy bruising. Like Hashimoto’s, there is no cure for EDS. Jamil confirmed her condition after a fan asked her why her arm was overextended in a photo on Twitter, then subsequently posted a video stretching her skin.

Jamil also described how hard it is to take care of herself, while others around her experience few health problems, even if they don’t care for their health. She wrote on her Instagram page, “Shout out if you are so fucking tired of having to protect yourself in a bubble while so many other people are able to just eat what they want, take drugs, stay out all night, drink a lot, take risks, do sports….etc. But you make one less than perfect choice and your day/week is ruined. The envy is real…I see you. I hear you. I feel you. I’m with you.”

To read more about Jameela Jamil and her fight against Hashimoto’s and EDS, click here.

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How a 71-year-old man got diagnosed with Autoimmune Encephalitis (AE)

Robert Given was a 71-year-old Accountant who ran his own CPA firm and was heavily involved in his local community. Although he didn’t have any prior history of autoimmune disease, he suddenly found himself impacted by a severe autoimmune condition.

While dining out with friends, Given suddenly slumped over, had a seizure, and urinated on himself. Restaurant patrons helped him to lay on the floor and called an ambulance. By the time the ambulance arrived, he had regained consciousness but was confused, refusing to step into the ambulance until his wife told him to.

After being evaluated by a number of physicians, including an internist and a neurologist, the medical professionals made several interesting discoveries. Given had had a sudden drop in blood pressure that was uncharacteristic for someone with well-controlled high blood pressure like himself. His wife also reported that he was losing his balance, had difficulty sleeping and sometimes had slurred speech. He was also highly talkative, to the point that it appeared to be logorrhea – a constant need to talk, even if the speech is often incoherent and repetitive.

Given had a second seizure, and was once again transported to the hospital. After this second episode, his doctor pondered what condition could possibly cause a sudden onset of both neurological and psychiatric symptoms. He hypothesized that his patient might have either Multiple Sclerosis (MS), or some type of heavy metal toxicity and ordered a round of tests to see if this was the case.

The tests came back negative for MS and heavy metals, and his medical team thought that they had to go back to the drawing board. Suddenly, however, his internist Dr. Hersch realized that he had seen a similar case several years prior; the patient had died, but his test results had revealed that he had autoimmune encephalitis (AE), a group of conditions in which the immune system mistakenly attacks the brain.

Dr. Hersch ordered a new round a tests that confirmed that Robert Given did indeed have a type of autoimmune encephalitis caused by a rogue antibody called CASPR2. Symptoms included fluctuations in blood pressure and heart rate, loss of balance, insomnia, and personality changes, and the majority of patients were men over the age of 65- just like Given!

Given has been receiving treatment for his condition at the Mayo Clinic for the last three years. Due to the difficult nature of this disease, his recovery is slow, but he is relieved to have been diagnosed in time to receive life-saving medication.

The Autoimmune Encephalitis Alliance says that while Given is lucky to have received a diagnosis, their aim is to raise awareness so that others with AE do not have to rely on luck to determine the outcome of the disease.

To read the original story by Dr. Lisa Sanders from the New York Times, click here. Also, check out this trailer for Brain on Fire, a movie based on a real-life story of a woman with AE.