COME TO LIFE
Myasthenia Gravis:
A Living History
Welcome to the first-ever interactive MG experience that allows you to bring history to life by adding your own diagnosis milestone. Explore the past and present of myasthenia gravis. Start with the most current developments and then work your way back to 1644 with the first recognized case of MG. Jump through the different eras with the bars on the left. Scroll now to make your mark by adding your diagnosis year to the Living History.
Add your diagnosis year to MG history
You’re invited to become a part of history by joining fellow MGers in adding your diagnosis year to the Living History. No history of MG is complete without input from the people who live with it every day. See what historical milestone happened close to your date and how many other MGers reported their diagnoses in that year.
You’ve joined the Living History
Now see how many other MGers have added their diagnosis year and what historical milestone is close to your date.
Clinical Trials in MG Patients
As of today, there are multiple clinical trials currently underway for generalized myasthenia gravis (gMG).1
International Experts Update
A group of 16 international experts releases new recommendations to help physicians treat people with MG, International Consensus Guidance for Management of Myasthenia Gravis: 2020 Update. This guidance is written by physicians for physicians, but you can share this link with your doctor.2
MG Cultural Moments
Grammy Award Winner Static Major
Stephen Garett, known in the hip hop community as Static Major, was admitted to the hospital after experiencing labored breathing and diagnosed with MG at the age of 33. After his death, his 2008 hit with Lil Wayne, “Lollipop” was released and went on to be 2008’s best-selling digital single.3
Reggae Producer Augustus Pablo
Known for his “Far East sound,” Horace Swaby, better known as Augustus Pablo, lived with MG and worked alongside many notable artists including Bob Marley.4
Dynamic Big Band Singer Connie Haines
Connie Haines (birth name: Yvonne Marie Antoinette JaMais) was an American singer known for her up-tempo band songs who had MG and performed alongside the Tommy Dorsey Orchestra and Frank Sinatra.5
A Mystery to Me Released
argenx released the first-ever MG documentary series, A Mystery to Me, aimed at increasing the public’s awareness and understanding of this rare disease. With thousands of MG community members, the debut was likely the largest virtual MG gathering in history.
MG United Launched
argenx unveiled MG United to provide personalized resources aimed at helping you and your caregivers through your battle with MG. No matter where you are in your MG journey, MG United offers straightforward, reliable information about myasthenia gravis.
MG Cultural Moments
Chef’s Table - 2019
Netflix’s popular docuseries Chef’s Table features James Beard Award winner Sean Brock. The episode explores Chef Brock’s journey with myasthenia gravis along with his passion for Southern cuisine and authentic local ingredients.
Empire - 2015
Main character Lucious Lyon played by Terrence Howard in Fox’s hit TV show Empire is initially misdiagnosed with a neurological condition in season one. His correct diagnosis of MG comes at the close of the season as a major plot twist.
MG Cultural Moment
Business Tycoon Aristotle Onassis
Greek shipping magnate and Jackie Kennedy’s second husband, Onassis was a very prominent 20th century figure. During the later years of his life, he was diagnosed with MG and experienced respiratory failure at the age of 69.6
Second MG Treatment Approved in Over 60 Years
This FDA approval comes years after the first MG treatment was approved in 1955, providing an additional treatment option for people living with MG.7,8
Treatment Guidance Task Force Established
Myasthenia Gravis Foundation of America (MGFA) appoints a task force composed of 15 international experts to develop treatment guidance for people living with myasthenia gravis. This group published the first internationally accepted standard of care treatment guideline and recently released a new 2020 update.9
MG Cultural Moment
Principal Chief of the Cherokee Nation Wilma Pearl Mankiller
The first woman elected as Principal Chief of the Cherokee Nation, Mankiller advocated for healthcare and education for her people. She was diagnosed with myasthenia gravis in 1979.10
argenx Founded
argenx was founded in 2008 by three colleagues, including current CEO Tim Van Hauwermeiren and CSO Hans de Haard with the goal of developing innovative potential new treatments for people living with severe autoimmune diseases, including gMG.
MG Cultural Moments
House - 2005
In season two, episode six of House, a myasthenia gravis diagnosis was confirmed when House connected a tumor in a patient’s neck (thymoma) to his low red blood cell count.
Law & Order: Criminal Intent - 2005
Airing for ten seasons, the popular show Law & Order: Criminal Intent included a character with myasthenia gravis in season five, episode eight.
MG Cultural Moments
Featured White House Sculpturist Leland Brewsaugh
A famous US wildlife sculptor, designer and painter with MG, Brewsaugh’s notable pieces are featured in private collections around the globe. His notable life-sized bald eagle was gifted to the White House and is now a part of the Smithsonian Museum.11,12
Pink Panther Star David Niven
Appearing in nearly 100 films, including James Bond, Around the World in 80 Days and Pink Panther, Niven was a beloved actor, novelist and memoirist who lived with a neuromuscular disease believed to be MG.12
Research and Advocacy Groups
For Over 70 Years, Research and Advocacy Groups Have Been Supporting People Living With MG and Their Caregivers.
2021-1980
2020
Myasthenia Gravis Holistic Society
2016
Myasthenia Gravis Foundation of Illinois is now Conquer Myasthenia Gravis
2009
Global Genes founded
2009
EveryLife Foundation for Rare Diseases founded
1983
National Organization for Rare Disorders (NORD) founded
Ice Pack Test Confirms MG Diagnosis
An ice pack can help diagnose a patient who presents with symptoms of ocular, eye or eyelid related, MG without having to wait for a blood test. Temporary improvement in ptosis, a droopy eyelid, after using the ice pack for two to five minutes allows physicians to quickly rule out other neuromuscular diseases as the cause of symptoms.13
MG Research Discovery
Targeted removal of antibodies, such as acetylcholine (ACh), at the neuromuscular junction (NMJ) was discovered when A.J. Pinching, D.K. Peters, and John Newsom-Davis were able to show symptom improvement in three of their patients. Mary Walker had previously shown that the NMJ was the site of disease origin in 1934.14
First FDA Treatment Approved for MG
While there is no cure for myasthenia gravis, the FDA approved the first drug to treat symptoms of MG in 1955. It would take more than 60 years before another therapy was approved in 2017.7,8
MG Cultural Moments
Hollywood Star Roger Smith
Beloved private eye on 77 Sunset Strip, Smith was diagnosed with myasthenia gravis in 1965. He was married to actress Ann-Margret; together they were a prominent couple on the Hollywood scene.15
Greatest English-Speaking Actor of the 20th Century Sir Laurence Olivier
Founding director of Britain’s National Theatre and acclaimed actor, Olivier is known for his roles in Shakespearean plays, as well as in other classics such as Wuthering Heights, and is believed to have lived with MG.16
Winnie-the-Pooh Muse Christopher Milne
The inspiration behind Christopher Robin in Winnie-the-Pooh books written by his father, A.A. Milne, Christopher had myasthenia gravis during the last years of his life.17
Thymus Connected to MG
After removing a tumor found in a patient’s thymus resulted in a favorable outcome, Alfred Blalock established a connection between the thymus and myasthenia gravis.18 The thymus is an organ that’s a part of the immune system, and removing the thymus (thymectomy) was later considered as a treatment option.19
MG Cultural Moment
Charming Disney Character Sleepy from Snow White and the Seven Dwarfs
According to showbiz legend, the popular Disney character, Sleepy, was modeled after a friend of Walt Disney’s who had myasthenia gravis. Sleepy’s character is often seen struggling to stay awake and with droopy eyelids.12
Discovery of the Role of the Neuromuscular Junction and Antibodies in MG
Mary Walker connected the origin of MG to the neuromuscular junction after recognizing similarities in symptoms to plant poisoning. Through an experimental procedure, she observed temporary improvement in muscle function in one of her patients. Her discovery coincided with Sir Henry Dale and W. Feldberg presenting the first evidence that the antibody acetylcholine was released at the NMJ and impaired muscle contraction.14
Pseudoparalytica Dropped From Myasthenia Gravis Name
In November of 1899, the Berlin Society of Psychiatry and Neurology dropped the word “pseudoparalytica” from the previously named “Myasthenia gravis pseudoparalytica.” This term was originally used to indicate a lack of structural changes in the body. Two years later, The Principles and Practice of Medicine was updated to include the current term, “myasthenia gravis.”18
MG is Named
In 1895, Friedrich Jolly became the first person to use the term “myasthenia gravis pseudoparalytica” to describe the condition of two teenage boys who displayed muscular weakness with periods of recovery. Wilhelm Heinrich Erb and Samuel Goldflam both documented earlier cases similar to Jolly’s in 1893 and 1879 and the name “Erb-Goldflam Symptom-Complex” was used for this new disease entity.18
Second Hallmark Publication Distinguishing Key Features of MG - 1893
Samuel Goldflam’s 1893 publication documented three cases that featured muscle weakness with periods of relapse and remission. Goldflam’s findings reinforced Wilhelm Heinrich Erb’s 1879 publication and are considered to be the first clear description of myasthenia gravis as a distinct disease.18
First Hallmark Publication Distinguishing Key Features of MG - 1879
Wilhelm Heinrich Erb’s publication in 1879 documented three cases with drooping eyelids, difficulty chewing and swallowing and neck muscle weakness. Erb’s description of these symptoms was the first to suggest a new disease that had not yet been described.18
Discovery of MG
Samuel Wilks provided the first description of myasthenia gravis at Guy’s Hospital in London after treating a girl with fluctuating muscle weakness and no disease origin.18
MG Cultural Moment
Sacred Art Designer Marie-Alain Couturier
Known for his famous stained-glass windows, Marie-Alain Couturier lived with myasthenia gravis and was also a French-Dominican friar and Catholic priest.20,21
First to Describe MG as a Distinct Clinical Entity
Thomas Willis was the first to document and describe myasthenia gravis as a clinical entity in his book Anima Brutorum. It would take another 200 years before additional advancements occurred.18
First Recognized Case of Myasthenia Gravis
Chief Opechankanough, who died in 1644, is considered the first American case of MG. He was unable to walk and is depicted as leading his troops to battle on a litter—a covered couch with poles for carrying—as well as having his attendants lift his eyelids. Notably, Chief Opechankanough was Pocahontas’ uncle.14
Make your mark
Now that you’ve seen the history of MG, don’t forget to mark the timeline where your MG journey began. Because you are part of MG History.
You’ve made your mark
Now that you’ve seen the history of MG, do you remember what milestone happened around your diagnosis year? Check back to see if you’re right and if any additional MGers have added their date.
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References
- clinicaltrials.gov. Updated April 16, 2021. Accessed April 2021. https://clinicaltrials.gov/ct2/results?cond=Generalized+Myasthenia+Gravis&Search=Apply&recrs=a&recrs=f&recrs=d&age_v=&gndr=&type=&rslt=
- Narayanaswami P, et al. Neurology. 2021;96:114-122.
- Bailey PM. Static star. Leo Weekly. Accessed April 2021. https://www.leoweekly.com/2009/02/static-star/
- Pareles J. Augusto Pablo, 46, musician; helped shape reggae's sound. New York Times. May 20, 1999. Accessed April 2021. https://www.nytimes.com/1999/05/20/arts/augusto-pablo-46-musician-helped-shape-reggae-s-sound.html
- Heckman D. Big band singer shared spotlight with Sinatra. Los Angeles Times. September 26, 2008. Accessed April 2021. https://www.latimes.com/archives/la-xpm-2008-sep-26-me-haines26-story.html.
- Onassis is ailing with two diseases; specialist on way. New York Times. February 5, 1975. Accessed April 2021. https://www.nytimes.com/1975/02/05/archives/onassis-is-ailing-with-two-diseases-specialist-on-way.html
- Alexion. FDA approves Soliris® (eculizumab) for the treatment of patients with generalized myasthenia gravis (gMG). 2017.
- DHHS. Federal Register. 2005;70(118):35683-35684.
- Sanders DB, et al. Neurology. 2016;87(4):419-25.
- Tyler R. Wilma Mankiller. National Woman’s History Museum. 2018. Accessed April 2021. https://www.womenshistory.org/education-resources/biographies/wilma-mankiller
- Leland Brewsaugh obituary. Florida Times Union. May 2003. Accessed April 2021. https://www.legacy.com/obituaries/timesunion/obituary.aspx?n=leland-brewsaugh&pid=1000601
- Milloy C. Living with an invisible disease. Bryan County News. June 29, 2008. Accessed April 2021. https://www.bryancountynews.com/opinion/living-with-an-invisible-disease/
- Sethi KD, et al. Neurology.1987;37(8):1383-1385.
- Keesey JC. Myasthenia Gravis, an Illustrated History. Publishers Design Group; 2002.
- Longo J. ‘77 Sunset Strip' star Roger Smith dies at age 84. USA Today. Updated June 6, 2017. Accessed April 2021. https://www.usatoday.com/story/life/people/2017/06/05/roger-smith-star-of-77-sunset-strip-dies-at-age-84/102535268/
- From the archives: Laurence Olivier, called greatest actor of his time, dies. Los Angeles Times. July 12, 1989. Accessed April 2021. https://www.latimes.com/local/obituaries/la-me-laurence-olivier-19890712-story.html
- Eberson S. The real Winnie-the-Pooh FAQ. Pittsburgh Post-Gazette. October 26, 2017. Accessed April 2021. https://www.post-gazette.com/ae/movies/2017/10/26/The-real-Winnie-the-Pooh-FAQ/stories/201710270014
- Nguyen-Cao TM, et al. J Neurol Sci. 2019;406:116428.
- Northwestern Medicine. Thymectomy. Accessed April 2021. https://www.nm.org/conditions-and-care-areas/treatments/thymectomy#:~:text=A thymectomy is the surgical,tumor on the thymus gland
- Weber NF. Le Corbusier: A Life. Alfred A. Knopf; 2008.
- Ganzarolli de Oliveira JV. Annals of Global History. 2019;1(12):1-3.