Happy Holidays from the Autoimmune Community Institute
Holiday Greetings, Autoimmune Research and News, Advocacy and Community Support, Call for Volunteers
We wish you a joyful and restful holiday season!
2024 was quite a year for ACI.
After the past few years of running our activities, we we needed to take some rest since starting the organization in 2020. As an autoimmune-run organization, sometimes we need to take care and rest too.
Starting an organization takes time, energy, focus, and lots of effort! Nonetheless, we are not leaving, and we are dedicated to the vision of autoimmune health and quality of life for all. We have been here for almost 5 years now and will be celebrating this anniversary in late winter/early spring 2025! Consider helping us prepare for the celebration and our activities with a tax-deductible donation.
In today’s newsletter, we are bringing awareness of the latest research as well as advocacy needs in the autoimmune community. We hope that our community members will be blessed with their healthcare needs being met this holiday season. We welcome tax-deductible donation, but if you are unable to donate, we also need volunteers.
Build Your Resume with Us
We are reaching out for volunteers in:
-Community Advocacy
-Policy
-Community Based Research and Data Analysis
-Event Coordination
-Marketing
-Fundraising
For more details, contact april@acicommunity.org
Autoimmune News and Research Updates
The Long COVID Puzzle: Autoimmunity, Inflammation, and Other Possible Causes
“Infection with the SARS-CoV-2 virus may trigger autoimmune disease. Elevated levels of autoantibodies, which are believed to play a role in other autoimmune conditions, such as lupus (SLE), rheumatoid arthritis, or Sjögren’s syndrome, have been noted in some patients with Long COVID. Normally, antibodies respond to foreign invaders, such as bacteria and viruses. Autoantibodies instead can attack the body’s own cells, leading to inflammation and tissue injury.” Learn More
Immune mechanisms and shared immune targets in neurodegenerative diseases
“This Review considers in detail how microglia, monocytes and T cells contribute to the pathogenesis of multiple sclerosis, Alzheimer disease, amyotrophic lateral sclerosis and Parkinson disease, and their potential as shared therapeutic targets across these diseases. The microbiome is also highlighted as an emerging therapeutic target that indirectly modulates the immune system. Therapeutic approaches being developed to target immune function in neurodegenerative diseases are discussed, highlighting how immune-based approaches developed to treat one disease could be applicable to multiple other neurological diseases.
What is Guillain-Barré Syndrome?
“Guillain–Barré syndrome (GBS) is a rare immune-mediated polyradiculoneuropathy. Patients typically develop rapidly progressive weakness and sensory deficits that can result in complete paralysis requiring mechanical ventilation. GBS is usually a monophasic disease in which an aberrant immune response to an infection or other trigger damages the peripheral nerves. For example, in patients with preceding Campylobacter jejuni infection, molecular mimicry causes a cross-reactive antibody response to nerve gangliosides. Diagnosis is based on clinical features, supported by cerebrospinal fluid analysis and nerve conduction studies. Effective treatments include plasma exchange and intravenous immunoglobulins. However, ~20% of patients who received treatment are unable to walk after 6 months and ~5% die as a consequence of GBS. Important knowledge gaps in GBS include its pathogenesis, especially after viral infections. In addition, there is a lack of specific biomarkers to improve the diagnosis, monitor the disease activity, and predict the clinical course and outcome of GBS. Major challenges for the future include finding more effective and personalized treatments, which are affordable in low-income and middle-income countries, and preparation for outbreaks of infections as potential triggers for GBS.” Learn More
Learn more about NIH Autoimmune Research and News updates
Community Support News
Image: Emmitt Henderson III of Male Lupus Warriors with a wolf and a butterfly, and his organization logo, Male Lupus Warriors
Help Emmitt Find a Kidney
Our monthly autoimmune support groups continued throughout this past year with the leadership of Emmitt Henderson III, Board Member and leader of Male Lupus Warriors. We appreciate you, Emmitt!
Emmitt has been a wonderful friend over the years and is local to the San Diego area. He is one of the few males with lupus through his organization Male Lupus Warriors, and does excellent work with outreach and support to men with lupus, and for all in the autoimmune community.
If you are not aware, Emmitt has been in need of a kidney donor. He has been thorugh some health challenges, and requires several hours of dialysis every day.
We’re reaching out with an urgent plea for a living kidney donor to help. Your selfless act can bring hope, healing and a second chance to someone in desperate need. If you or someone you know is willing to consider this life-saving gift, please reach out.
Every moment counts, and your kidnness could make all the difference. Thank you for your compassion and generosity.
If you or a loved one can help Emmitt find a kidney donor, please reach out to malelupuswarrious@gmail.com or malelupuswarriors.org.
Insurance Challenges for Autoimmune Medications
Meet Kaitlyn Sy:
Image: Kaityn Sy at the hospital, from her GoFundMe page
We recently had the opportunity to meet Kaitlyn Sy, a medical student with a rare autoimmune condition called ITP, and her insurance company will not cover the cost of her monthly medication.
Learn more about Kaitlyn from her TV news story.
Here is her recent LinkedIn post:
Not my usual post, but - What will it take for Blue Cross and Blue Shield of Kansas City to cover my medication?!!!
I am a med student going hundreds of thousands of dollars in debt for my education because I am determined to serve my community as a doctor. I volunteer in a clinic that serves in-need populations in Kansas City. However, I have ITP, an autoimmune disorder where my immune system attacks my platelets. Immunosuppressants and immunotherapy did not work, and I recently ended up in the emergency room because my platelet count was so low that I was at risk of bleeding to death. My hematologist prescribed Promacta as the next line of defense - but I can't afford to pay over $8,000 every month - and BCBSKC's response is to DENY. My care team has been fighting hard with BCBSKC to get them to cover my medication - and BCBSKC's response is to DELAY. As a stop gap, I am now on high dose immunosuppressants because my platelet count is already dangerously low - and I have to struggle through side effects while taking my final exams today. I would have been volunteering in the clinic over winter break, but I can't anymore because I am immunosuppressed. Why would Blue Cross and Blue Shield of Kansas City DENY and DELAY my access to medication and put my health at risk?!!! Why would they keep me from doing my best in med school and serving my community?!!! Somebody, please HELP!!! I want to LIVE!!!
-Kaitlyn Sy
We knew that we needed to reach out and support Kaitlyn as a future medical student with a bright future to help others with their health needs. We were recently able to celebrate that her current month of medication has been covered though GoFundMe but she has many months ahead in need of support. Here is Kaitlyn’s GoFundMe page if you can help.
Share Your Story on Our Blog
Do you have a 1-2 page story we can share on our blog post? Send us your story about living with autoimmune disease and what you have experienced and learned on this journey. Email info@acicommunity.org with your blog story or any questions.
ACI Needs Your Support
Happy Holidays and a Wonderful 2025 Ahead!
