Health Partners is recruiting for a Light vs Medium Intensity Exercise Study. The purpose of the study is To test the difference between light intensity and moderate intensity exercise on health outcomes in people with Myasthenia gravis (MG)
Annual Meeting September 28 2024
The Registration and Additional Details are now posted on the Events Page.
Importance of Sunscreen for Those Who Are Immune Suppressed
Dr. Giuliani spoke to our support group on May 18 2024, and wrote up some information for us.
Sunscreen is particularly important when using immunosuppressants like azathioprine and CellCept (mycophenolate mofetil) because these medications increase the risk of skin cancer.
Immune System Suppression: These drugs suppress the immune system to prevent organ rejection in transplant patients or to control autoimmune diseases. A suppressed immune system is less capable of repairing DNA damage caused by ultraviolet (UV) radiation from the sun, increasing the risk of skin cancer.
Photosensitivity: Azathioprine, in particular, can make the skin more sensitive to UV light, a condition known as photosensitivity. This heightened sensitivity means that the skin is more prone to damage from sun exposure, which can lead to an increased risk of skin cancers such as squamous cell carcinoma, basal cell carcinoma, and melanoma.
Increased UV-Induced Mutations: Immunosuppressive drugs can contribute to increased mutations in the DNA of skin cells when exposed to UV radiation, promoting the development of skin cancer.
Given these risks, it's crucial for patients on these medications to protect their skin from sun exposure. This includes using sunscreen with a high SPF, wearing protective clothing, and avoiding excessive sun exposure, especially during peak UV hours.
Azathioprine: Patients on azathioprine have an increased risk of non-melanoma skin cancers, especially squamous cell carcinoma. The relative risk can be up to 65 times higher than in the general population on transplantation rejection doses, with an unclear amount of risk increase with doses for neuromuscular disease.
CellCept (Mycophenolate Mofetil): Similar to azathioprine, this drug increases the risk of skin cancers, although the risk is lower compared to azathioprine.
- Tacrolimus: This drug also increases the risk of skin cancers, particularly when used topically, though systemic use in transplant patients is associated with an elevated risk. There is no risk known associated with using at neuromuscular disease doses.
- Methotrexate: This drug is associated with a modest increase in the risk of skin cancer, particularly non-melanoma skin cancers.
Relationship of Vitamin D Disorders and Autoimmune Conditions
However, Vitamin D plays a role in the regulation of the immune system, and deficiencies in vitamin D have been associated with an increased risk of developing autoimmune conditions, including myasthenia gravis. Vitamin D modulates the immune response, and insufficient levels may lead to an increased autoimmune activity.
It is important to keep a balance of Vitamin D generation which occurs with exposure to sunlight, and skin protection from sunlight.
Vitamin D Deficiency and Autoimmunity: Low levels of vitamin D are common in individuals with autoimmune diseases. This deficiency may exacerbate the disease's activity and symptoms. *Myasthenia Gravis: Some studies suggest that vitamin D deficiency might be linked to both the onset and severity of myasthenia gravis, though more research is needed.
Using Sunscreen and Maintaining Vitamin D Levels Balancing sun protection and vitamin D synthesis involves:
Sensible Sun Exposure: Short, regular intervals of sun exposure can help maintain vitamin D levels without significantly increasing skin cancer risk. About 10-30 minutes of midday sun exposure several times a week may suffice, depending on skin type, location, and season.
Dietary Sources and Supplements: Consuming foods rich in vitamin D (such as fatty fish, fortified dairy products, and egg yolks) and taking vitamin D supplements can help maintain adequate levels without relying on sun exposure.
Timing and Sunscreen Application: Applying sunscreen after a brief period of sun exposure (ie 5-10 minutes) allows for some vitamin D synthesis while still providing protection.
It's important to discuss with your doctor to tailor these recommendations based on individual health needs and risks.
National Patient Conference April 2024 FREE via Zoom to Patients and Caregivers
The 2024 National Patient Conference is scheduled for April 2024. It is available for free to patients and caregivers.
Information is available on their website. Click HERE for details.
Research Opportunity
Brain and Life Article about Managing Anxiety
Brain and Life published an article about managing anxiety which can happen to people with neurological disorders.
Click here to access the article.
This topic was discussed at the June Support Group meeting.
Brain and Life Articles Provide Interesting Information
There are two articles from recent issues of Brain and Life (brainandlife.org) that may be of interest to the group. The links to the articles are:
Chris Hemsworth pushes boundaries
https://www.brainandlife.org/articles/chris-hemsworth-pushes-limits-learn-how-brain-body-age
Ultra-processed foods and Dementia
https://www.brainandlife.org/articles/eating-ultra-processed-foods-may-increase-risk-of-dementia
Eight Benefits of Belonging to a Support Group
This was from a local paper in The Villages, Florida
Eight Benefits of belonging to a support group.
Reducing distress, depression, anxiety or fatigue
Improving skills to cope with challenges
Gaining a sense of empowerment, content or hope
Getting practical feedback about treatment options
Feeling less lonely, isolated or judged
Talking openly and honestly
Staying motivated to manage chronic conditions or stick to treatments
Improving understanding of a disease and your own experience with it
These reasons are why you should join our support group meetings. Check the Local Groups section for details.
Thank YOU! Give To The Max Day November 17
mgMN participated in Give To The Max Day 2022! Thank YOU to those who donated. It is appreciated.
You can donate anytime between now and November 17 and choose mgMN. 100% of your donation will go to our organization.
Give to the Max Day was created in 2009 to launch GiveMN, a collaborative venture led by Minnesota Community Foundation and many other organizations committed to helping make our state a better place. That initial spark touched off an outpouring of generosity to the Max Day has become — $14 million in 24 hours. Since then Give To The Max Day has become Minnesota’s annual giving holiday, raising $250 million in its first 13 years . Every year, thousands of organizations and individuals generate donations and excitement for Minnesota causes that are working to improve quality of life for all Minnesotans . Give to the Max Day has become a national model for giving days.
“Give to the Max is truly a grassroots giving event,” said Jake Blumberg, executive director of GiveMN. “It shows the power of what can happen when we give together, raising tens of millions of dollars just $10, $20, and $100 at a time.”
Annual Meeting September 25, 2022 via Zoom
BE YOUR BEST ADVOCATE
This year our State Meeting and Conference will be on September 25, 2022. We start at 9:00am.
We will be meeting via Zoom again this year. Even though things are opening up, we feel it is in our members’ best interest to proceed with caution. We will also have door prizes for those in attendance. The Zoom information will be posted.
This year our theme is Be Your Best Advocate,
Our speakers this year:
Parker Maertz (Manager of the Consumer Division of the Attorney General’s Office) will be speaking on “Navigating the Health Care System”:. He will also be available for questions.
Kathy Logan (Nurse with Alexion) will present “Your Role in Health Care”
To register in advance, please send an email to mgmnorg@gmail.com