IAES launched its first “Tuesday Tries” on May 25th. AE patients and caregivers were so grateful to meet, share and validate each other’s experiences and share their personal stories.

The next monthly zoom meet-up will take place June 29th and will always take place the last Tuesday of each month.  Join us to celebrate your critical milestones in recovery and care and help yourself  build a more resilient network!

Your facilitator, Tessa McKenzie, IAES’ Chief Resilience Officer, is a life coach and studies “resilience” through her private practice, Envisage Vocation Creation and work with Johns Hopkins University’s Life Design Lab. IAES would like to extend our congratulations to Tessa for having just been named President-elect of the Maryland Career Development Association.

Join Tessa and other AE patients and caregivers who are ready to “Share Your Try Tuesdays”. Tessa will provide prompts for the reframe of perceived failures as well as peer-to-peer validation of “wins” and opportunities for relationship building.

From The Lane to the Race

New arrivals at The AE Warrior Store. We are pleased to present ~The AE Wingman Collection.  Get some  swag for your spouse, partner, BFF, caregiver, or advocate that is sure to bring a smile and remind them of how proud you are of their fighting spirit and dedication to helping you on your AE journey. 

Any AE Warrior knows that we are NOTHING without our #AEWingman’s support and guidance. Our Wingman is the person who has been right by our side encouraging us every inch of our AE journey. 

The moniker “AE Wingman” should invoke a sense of pride and reaffirmation of the courage and determination it has taken to advocate so long and hard to help us regain health.

Don’t forget to #GiveAtCheckOut if you purchase your gift through PayPal! (See: Shop and Support IAES Through PayPal’s #GiveAtCheckOut program below). 

The proceeds of your purchase will immediately support Autoimmune Encephalitis patients, caregivers, and families who are walking this difficult journey. Proceeds also go to support research that may one day lead to a cure.

When a family member develops Autoimmune Encephalitis it can change family roles. The outcome may be uncertain with recovery occurring over time. This may require family to adjust their roles as the person recovers. These issues are seldom addressed or discussed but are felt by all family members. This article discusses how disability effects families both if the disabled family member is a child or if the disability occurs when the individual is an adult. It may help families realize the role changes that occur and help provide some understanding.

Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need. All in one place.

This is an easy-to-follow graphic that focuses on 5 types of AE and what is seen in the ICU.
It lists the history of the illness, what triggers that type of AE (what we know so far), signs, test results and treatments recommended.

If you are on steroids for your AE. Talk to you doctor about supplemental calcium, vitamin D and hormone replacement. Additionally, eat a diet rich in calcium and vitamin D.

Summary: Patients who will remain on glucocorticoids for more than a few weeks are clearly at risk for osteoporosis. Steroid‐induced bone loss should be prevented, and if present, should be treated. Exercise programs and the maintenance of a good nutritional status with an adequate calcium and phosphate intake and a restricted sodium intake are recommended. Supplementation with calcium and vitamin D should be given to all patients to restore normal calcium balance. Hormone replacement therapy should be considered in amenorrhoeic women. Patients with medium‐ to high‐dose steroid therapy should receive bisphosphonates or an activated form of vitamin D. Therapies should be continued as long as the patients are on steroids. To ensure that prevention of steroid‐induced osteoporosis is developing as the standard of care for patients receiving long‐term steroid treatment, a broad educational effort directed to physicians of various specialties is needed.

Table 1 provides dose recommendations for Calcium, Vitamin D and hormone replacement.

Highlights

• Proteasome inhibitor bortezomib could have a role in anti NMDA receptor encephalitis.

• Half of patients treated with bortezomib improved, but side effects were common.

• Larger and more homogeneous cohorts should be included in future trials.

N-methyl-d-aspartate receptor (NMDAR) encephalitis is a potentially treatable condition, although a small proportion of patients remains refractory to immunotherapy. Bortezomib is a proteasome inhibitor that has a promising role in autoimmune conditions. We performed an independent PubMed search employing “Anti-N-Methyl‑D-Aspartate encephalitis AND bortezomib”, including papers published between January 1st, 2007 to April 15th, 2021. Fourteen articles were included, with 29 patients. 16 patients (55.2%) had a favorable outcome after bortezomib and 11 (37.9%) patients developed side effects. Quality of studies was overall poor and future trials should aim to include more homogeneous and larger cohorts.

Get that great deal online and support IAES at the same time!

When you shop Amazon Smiles and select IAES as the non-profit you want to support, Amazon will donate 5% of our purchases to the International Autoimmune Encephalitis Society.

This simple act of kindness, will support the work we do and advance our ability to service the community.

Smilematic, is a handy tool that will automatically redirect you to smile.amazon.com when you are shopping so you never have to worry about forgetting to type it in to ensure benefits go to IAES.