Patient Health Alliance

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Building support and community for those navigating NMOSD and rare disease. This relapsing form of NMO primarily affects women.
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Follow PHA on Instagram: https://www.instagram.com/patienthealthalliance/ Neuromyelitis optica (NMO) is an uncommon disease syndrome of the central nervous system (CNS) that affects the optic nerves and spinal cord. Individuals with NMO develop optic neuritis, which causes pain in the eye and vision loss, and transverse myelitis, which causes weakness, numbness, and sometimes paralysis of the arms

and legs, along with sensory disturbances and loss of bladder and bowel control. NMO leads to loss of myelin, which is a fatty substance that surrounds nerve fibers and helps nerve signals move from cell to cell. The syndrome can also damage nerve fibers and leave areas of broken-down tissue. In the disease process of NMO, for reasons that aren’t yet clear, immune system cells and antibodies attack and destroy myelin cells in the optic nerves and the spinal cord. Historically, NMO was diagnosed in patients who experienced a rapid onset of blindness in one or both eyes, followed within days or weeks by varying degrees of paralysis in the arms and legs. In most cases, however, the interval between optic neuritis and transverse myelitis is significantly longer, sometimes as long as several years. After the initial attack, NMO follows an unpredictable course. Most individuals with the syndrome experience clusters of attacks months or years apart, followed by partial recovery during periods of remission. The female to male ratio is greater than 4:1. Another form of NMO, in which an individual only has a single, severe attack extending over a month or two, is most likely a distinct disease that affects men and women with equal frequency. The onset of NMO varies from childhood to adulthood, with two peaks, one in childhood and the other in adults in their 40s. In the past, NMO was considered to be a severe variant of multiple sclerosis (MS) because both can cause attacks of optic neuritis and myelitis. Recent discoveries, however, suggest it is a separate disease. NMO is different from MS in the severity of its attacks and its tendency to solely strike the optic nerves and spinal cord at the beginning of the disease. Symptoms outside of the optic nerves and spinal cord are rare, although certain symptoms, including uncontrollable vomiting and hiccups, are now recognized as relatively specific symptoms of NMO that are due to brainstem involvement. The recent discovery of an antibody in the blood of individuals with NMO gives doctors a reliable biomarker to distinguish NMO from MS. The antibody, known as NMO-IgG, seems to be present in about 70 percent of those with NMO and is not found in people with MS or other similar conditions. Is there any treatment? There is no cure for NMO, but there are therapies to treat an attack while it is happening, to reduce symptoms, and to prevent relapses. Doctors usually treat an initial attack of NMO with a combination of a corticosteroid drug (methylprednisolone) to stop the attack, and an immunosuppressive drug (azathioprine) for prevention of subsequent attacks. If frequent relapses occur, some individuals may need to continue a low dose of steroids for longer periods. Plasma exchange (plasmapheresis) is a technique that separates antibodies out of the blood stream and is used with people who are unresponsive to corticosteroid therapy. Pain, stiffness, muscle spasms, and bladder and bowel control problems can be managed with the appropriate medications and therapies. Individuals with major disability will require the combined efforts of occupational therapists, physiotherapists, and social services professionals to address their complex rehabilitation needs. References
Office of Communications and Public Liaison National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD 20892
NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. Excerpts taken from: NINDS Neuromyelitis Optica Information Page.

A special thank you to the friends who stand beside us through the ups and downs of living with a rare disease. Whether ...
06/25/2026

A special thank you to the friends who stand beside us through the ups and downs of living with a rare disease. Whether you check in, learn about our diagnosis, listen, or simply show up, your support matters more than you know.

💚 Friends and loved ones are always welcome at Patient Education Days. Join us as we learn, connect, and strengthen our community together.
We can’t wait to see everyone in Cleveland on August 15 for another meaningful opportunity to connect, learn, and grow together.

Register here: https://lp.constantcontactpages.com/ev/reg/8yzmndq
Thank you to our sponsors Alexion Pharmaceuticals US, Amgen, and Genentech.

On a good day, what do you consider a win? ☀️Maybe it’s overcoming a challenging day, prioritizing your health over less...
06/22/2026

On a good day, what do you consider a win? ☀️
Maybe it’s overcoming a challenging day, prioritizing your health over less important tasks, or finding joy in the little things. Let us know in the comments!

Living with a rare neuroimmune disorder can feel like so much is out of your control. Your body may not work the way it ...
06/22/2026

Living with a rare neuroimmune disorder can feel like so much is out of your control. Your body may not work the way it used to. Your days may revolve around doctor’s visits, unexpected hospital stays, or having to cancel plans because of a relapse or flare-up.

Taking charge of your life under these circumstances is hard—but not impossible.

That’s why SRNA has partnered with Can Do MS to offer a free coaching series designed to help you regain a sense of control. Through four weekly sessions with others in the rare neuroimmune disorders community, you’ll learn to set meaningful goals, build practical skills, and create plans that support the life you want to live.

Register today at srna.ngo/coaching to reserve your spot.

Space is limited! We want to see you in Cleveland. Registration is open for Together – Cleveland NMOSD Patient Education...
06/19/2026

Space is limited! We want to see you in Cleveland.

Registration is open for Together – Cleveland NMOSD Patient Education Day!
Join us August 15th in Cleveland for a day of trusted education, meaningful connection, and community.
Learn from experts, hear lived experiences, explore programs and resources, spend time with people who truly understand the unique challenges of navigating the NMOSD, MOGAD, and rare disease journey.
💚 Register at the link here:
https://patienthealthalliance.org/nmosd-patient.../
🗓️ August 15, 2026
📍 Cleveland, Ohio

06/19/2026

Tune in to Elias Sotirchos, MD, presenting on "Treating Acute Relapses" in the fourth installment of NMOSD Master Class.

The field of NMOSD has profoundly evolved scientifically and clinically in the last 17+ years. While neurology specialists in NMOSD have kept pace with the numerous epidemiologic, immunologic, diagnostic and therapeutic advances, many non-specialist academic and community neurologists have not. Furthermore, delivering updated knowledge to these populations of neurologists via conventional academic or other settings has proven difficult. PHA will create a new, elevated “NMOSD Master Class” series of 6-12, presentations of academic-rigor to update non-specialty neurologists on the latest pearls in NMOSD diagnosis, therapeutics and clinical management. PHA will host these formal and remote-access events. We will promote these events internationally, and each event will be recorded and posted to the PHA website for future viewing.

Today, we honor Juneteenth and the ongoing pursuit of equity, inclusion, and opportunity for all.In the NMOSD community,...
06/19/2026

Today, we honor Juneteenth and the ongoing pursuit of equity, inclusion, and opportunity for all.
In the NMOSD community, health equity matters. Black individuals are disproportionately affected by NMOSD and may face barriers to diagnosis, care, treatment access, and research participation.
At Patient Health Alliance, we are committed to helping build a future where every person feels seen, supported, represented, and connected to the resources they need to thrive.
As we reflect on the significance of Juneteenth, we also recognize the importance of continuing conversations about health disparities and working toward more equitable healthcare for all.

Tu voz y tu experiencia importan. ¿Cómo te sientes hoy? Cuéntanos en los comentarios  - este es tu espacio. 💚¿Aún no ere...
06/17/2026

Tu voz y tu experiencia importan. ¿Cómo te sientes hoy? Cuéntanos en los comentarios - este es tu espacio. 💚
¿Aún no eres parte de nuestros grupos? ¡Regístrate hoy!
🗓️ NMOSD & MOGAD en Tu Idioma - cada último martes del mes, 7:00pm EST
🗓️ Cuidadores en Tu Idioma - cada último miércoles del mes, 7:00pm EST
🔗 https://patienthealthalliance.org/support-groups/
📋 "Your voice and your experience matter. How are you feeling today? Tell us in the comments - this is your space. Not part of our groups yet? Register today! NMOSD & MOGAD in Your Language - every last Tuesday of the month, 7:00pm EST / Caregivers in Your Language - every last Wednesday of the month, 7:00pm EST"

Please join us in celebrating Bri Holmes (Brianna Yvonne), who participated in the 2026 Future of Fashion Show, UN Editi...
06/12/2026

Please join us in celebrating Bri Holmes (Brianna Yvonne), who participated in the 2026 Future of Fashion Show, UN Edition in New York City as a Bullock Inclusion Model.

We are honored to recognize this exciting moment and the importance of representation and inclusion in spaces like fashion. The Future of Fashion Show: Bullock Inclusion, hosted by Samanta Bullock and the United Nations—an inclusive fashion showcase and evening dedicated to bringing together fashion designers, global brands, technology innovators, disability advocates, UN delegates, and the press to explore a shared question:

What does fashion look like when it is designed for the full spectrum of human bodies and experiences?

The answer is a runway that features real disabled models, adaptive and inclusive collections, and a conversation that refuses to treat inclusion as an afterthought.
Bri modeled a stunning design by inclusive fashion designer Sugandha Gupta, Whose work has been seen at the Met Gala, highlighting both innovation and accessibility in fashion.

Congratulations on this incredible opportunity, Briana, PHA is proud to celebrate this milestone with you.

Patient Day in Charlotte brought together our NMOSD and MOGAD community for a full day of expert-led presentations, real...
06/10/2026

Patient Day in Charlotte brought together our NMOSD and MOGAD community for a full day of expert-led presentations, real conversations, and the kind of connection that only happens when rare disease patients, caregivers and experts are in the same space.

PHA Patient Days exist because navigating a rare neuroimmune disease shouldn't feel isolating. You deserve direct access to the specialists, the research, and the community that can help you move forward with confidence.

Next stop: Cleveland, Ohio. 📍

If you or someone you love is living with NMOSD or MOGAD, this event was made for you. Come ready to learn, connect, and leave feeling supported.

🔗 Registration for Cleveland is open — link below. We hope to see you there.
https://lp.constantcontactpages.com/ev/reg/8yzmndq

06/09/2026

Adapt with Vilma! 💚

Adapt-Ability—brought to you by Patient Health Alliance, , and —is a collaborative video series designed to improve everyday life for the NMOSD, MOGAD, and neuroimmune community. Together, we are building a resource to introduce various tools for adapting to life after a rare diagnosis.

This program has been provided through an educational grant by , and .

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