What Every Myasthenia Gravis Patient Should Know

MGF of Illinois Fall Seminar

Seventy-five people were on hand October 25 at Advocate Lutheran General Hospital in Park Ridge, Illinois to hear Matthew Meriggioli, MD, share the latest information about myasthenia gravis. Dr. Meriggioli, Professor of Neurological Sciences at Rush University Medical Center, explained current understanding on topics such as why people get autoimmune disease, what happens in the immune system of an MG patient, antibodies that cause MG, and prevalence of thymus abnormalities in MG patients.

Dr. Wayne Rubinstein, fellow member of MGF of Illinois’ Medical Advisory Board, provided support for the meeting and introduced Dr. Meriggioli. We’re grateful to both doctors, as well as to attendee Dr. Julie Rowin, for sharing their time and expertise. A DVD of the presentation will be available for purchase in February.

Here are highlights covered by Dr. Meriggioli.

In myasthenia gravis patients, about 75% are found to have thymus gland abnormalities. Of these, 85% have “hyperplasia,” which, according to the MedlinePlus, is enlargement due to increased cell production in normal tissue. The remaining 15% have a thymoma, which is a benign or cancerous tumor of the thymus.

There are various types of MG. At diagnosis, 85% of MG cases are related to the patient having acetylcholine receptor (AChR) antibodies. Another 8% of patients have MuSK (muscle-specific tyrosine kinase) antibodies, 5% have low-affinity AChR antibodies, and 1% have LPR4 (lipoprotein receptor-related protein 4) antibodies.

The course of myasthenia gravis weakness varies from person to person, as the following summary shows.

Initial symptoms

Eye muscle weakness             75%

Head/neck weakness              15%

Limb weakness                         10%

Within first year

• Approximately 75% develop head/neck +/- limb weakness
• Approximately 67% reach maximum MG severity
• Approximately 20% experience MG crisis

The blood test for AChR antibodies has positive results for about 85% of MG patients, and for about 50% of those with ocular MG. In different patients, the test values do not correlate with severity of the disease. However, in a given patient, a change in the test values may correspond to a change in the disease.

Ben Maravilla’s granddaughter takes on the role of Miss MG at Aurora’s Puerto Rican Heritage Parade, July 2015.

Ben Maravilla is a one-man dynamo for raising MG awareness in Aurora, Illinois. For the third year running, he entered a “Myasthenia Gravis” float in Aurora’s July Puerto Rican Heritage Parade. His daughters and grandchildren got in on the fun. They walked with the “Myasthenia Gravis – Snowflake Disease” banner, handed out candy, and even elected a very lovely “Miss M.G.”!

Under Ben’s direction, the float was decorated to educate 2,000+ parade attendees about myasthenia gravis – and share a crowd-pleasing nod to Puerto Rican history, too!

Ben commented, “At one parade I found another woman who has MG. It’s a great way to help others learn about this disease. I even had a chance to tell Aurora Mayor Tom Weisner about MG.”

Next: The Fox Valley United Way Cardboard Boat Race

Ben’s putting his team together now to construct an entry for the upcoming cardboard boat race to be held Saturday, August 15, at Mastadon Park in Aurora. His past boats have displayed MG logos, and given his team an opportunity to share myasthenia gravis information with the community. In fact, in two of the last three years his paddlers took first place in the nonprofit division. Great way to let others know about this little known autoimmune illness.

You can stop by to see Ben, his team, and their boat:

• Race day, Saturday, August 15th
• At Mastodon Lake, Phillips Park, Aurora
• Boater registration begins at 8:30 a.m.
• Activities begin at 10:00 a.m., awards at noon
• Food, music, entertainment and a ton of fun are in store!

3rd Annual Strides Against MG Walk

Our family-friendly celebration to raise awareness for myasthenia gravis was all set for June 7, but Mother Nature had other plans. Over 100 MG supporters came out to cheer our cause, while the other 100 registrants opted to stay dry and raise awareness at home. Even so, our awareness-raising and fundraising efforts were very successful. The local Elmhurst newspaper ran an MG story, the event was posted on many online platforms, and many new folks heard the MG message. We doubled our net proceeds compared to last year, too, raising $20,875 to serve MG patients. Thank you, walkers, donors, and sponsors!

Check out pictures of the Strides Against MG event. What a fun group!

We’re very grateful to our Walk Sponsors for their support. They were FANTASTIC!