About The Order

The first tumor was discovered in 2007, when I was 34. A schwannoma; benign, incidental, the kind of thing that happens to people sometimes. It was removed in 2011. I moved on.

Then in early 2012, a second one grew large enough in my calf that moving at all meant stabbing, electrical pain. I knew surgery was the answer. I also knew we were still fighting the insurance from the surgery the year before, and I had more than one tumor now. I had them in both calves. Both arms. The pain wasn’t coming from one place anymore. It was coming from everywhere, all at once, a full-body electrical storm without a name.

I went looking for one. The only diagnosis I could find for multiple schwannomas was schwannomatosis. The only place to go was an NF-Clinic. I found one, waited four months for an appointment, and managed the months between on Tylenol, ibuprofen, and 222s because that was what I had. I was still working a full-time job. My husband would peel me from my vehicle when I came home, I was so stiff from the pain. Then December came, and my arm started shaking. Then my whole body. Then I could be paralyzed: an arm, a leg, everything at once. You never knew which, or for how long. The post-exertional crashes lasted hours, sometimes weeks.

During those four months I kept looking for someone who could help with what was happening to my body. The doctors I found along the way asked me if I was an alcoholic. Told me that I was triangulating. That anyone can remove a schwannoma. When I finally reached an NF Clinic, I was told that even if I had schwannomatosis, it wouldn’t be causing what I was describing. The MRI found one tumor and missed the rest. Without that evidence, I didn’t have proof. I left without answers.

So, I went to other doctors. Many other doctors. I was told I did not need medical help, I needed mental help and I was diagnosed with the psychiatric condition conversion disorder three times. It is in my chart to this day. I was treated for heavy metal poisoning. Someone tried to tell me I had Lyme disease. Every diagnosis was a door that opened into a room with nothing in it.

In 2018 I decided, without anyone’s agreement: my symptoms are caused by the tumors. The tumors are real, whether, or not, they appear on an MRI. I have schwannomatosis. My husband and I made plans to fly across the country to an expert. I have extreme anxiety about making phone calls, and by that point in my life, it was not hard to understand why. Making that appointment took everything I had. Johns Hopkins answered first. When that appointment was confirmed, I started counting.

294 days.

I got through each second of pain the only way available to me, finding things that didn’t make the pain worse, which is a narrower category than you might think. Every movement can increase disability. Being still helps, until the positioning itself begins to hurt. And in those 294 days, the question that lives inside that particular kind of uncertainty: Am I making this up? If the tumors were real, they would show on imaging. I had no proof. I had been told so many times, in so many ways, that this was a psychological problem, that some part of me had started to wonder whether they were right and I had somehow missed it. And then other days when I was absolutely certain, I had been cataloging symptoms for years and I had experienced nearly all of the 52 that we now list on this website’s symptoms page. That many symptoms don’t come from a mind inventing them. They come from a nervous system under siege.

April 2020. The appointment was canceled. COVID.

A new NF Clinic opened near me. I made another appointment. This time, the neurologist confirmed schwannomatosis, and found the spinal tumor that had been sitting in the 2013 MRI unreported for seven years.

What followed was not a resolution. It was a different kind of fight. The schwannomatosis diagnosis I had finally received in 2020 was taken away in 2023. The care I had built fell apart piece by piece. The neurologist I eventually saw that year opened our first appointment by asking why I was there. He had read my chart, he said. There was nothing to be done about my symptoms, nothing for the pain, no clinical trials available. The MRI again showed nothing where I expected something.

I found an online second opinion service. It connected me to Dr. Justin Jordan. He reviewed my records, my imaging, my pathology, and confirmed schwannomatosis-NOS with hybrid schwannoma-neurofibromas, tumors with features of both schwannomas and neurofibromas, which explained why they had confused every neurologist who encountered them. He confirmed that tumors can be so small they can fall beneath the resolution of standard MRI. He also recommended genetic testing.

I made an appointment at MGH. I was seen within five weeks. I qualified for the STARFISH clinical trial, there are 2 medications that you are randomly selected for. I was put on the way for Aimovig/erenumab siltuximab targeting the IL-6 pathway, targeting CGRP, and what happened next is the only reason I can sit here and write any of this. The medication calmed my nervous system. Now, with over 2 years of this miracle medication in my system I am mostly pain free, for the first time in over a decade. At least, pain free as I understand that phrase now, which is different from how I understood it before. Without most of my symptoms, if I don’t push too far. I followed Dr. Jordan to UT Southwestern when he relocated, and he remains my neurologist. Twice a year my husband and I fly thousands of miles for me to see someone who knows what I have. Over the years, that cost has moved from our savings account into our retirement fund, many tens of thousands of dollars, and we have done it without hesitation because the alternative was what the previous fourteen years looked like.

I was introduced to REiNS at the same time as MGH, and to parts of the CTF network over the years since. Now that I’m feeling better, I can organize what I found missing when I was searching. There was no central place for schwannomatosis patients. NF1, being more common, is the more recognized condition: more information, more websites, more resources. Even within schwannomatosis, NF2-related schwannomatosis had more of everything. The research, the clinical attention, the patient communities that existed were largely built around NF2. SMARCB1-related, LZTR1-related, and patients like me with no gene found at all were invisible even within that. Schwannomatosis was rare even within the NF community, itself already a rare disease world. Patients like me were scattered, invisible, and being seen by clinicians who had never encountered the condition before and had no reason to believe they ever would. The only symptom listed anywhere online was pain. The symptom list on this website started with a question I asked Claude: what would the symptoms of schwannomatosis actually be, given where these tumors grow? That conversation became the 52 we now list. There are Facebook and Reddit groups, but the only way to share news and new research is still by email. We needed a central hub. We needed to reach the clinicians who had never seen it. We needed to fund all of it, which meant building a nonprofit from scratch.

That is why The Order of the SWNs Foundation exists. And it is also why I needed a different kind of help to build it.

I am not a software engineer, a database architect, or a grant writer. I am a patient with chronic pain, cognitive fog on bad days, and a finite number of functional hours that I cannot afford to waste. I am also someone who spent the worst years of this illness building a crochet pattern business from whatever chair I could sit in, which gave me enough understanding of how computers work to know what I needed, but not nearly enough speed to build it. I could still be searching for the syntax for one line while Claude had the entire module compiled. That gap, between what I could do alone and what we could do together, is exactly why this foundation exists as more than an idea.

I built it in collaboration with Claude, an AI built by Anthropic. I want to be honest about that, because transparency about how this work was done is part of this foundation’s integrity.

Claude wrote every line of code on this website: the application, the database, the design, the deployment. I directed it. I reviewed everything it built, caught what was wrong, and made every decision about what this foundation would be and do. Claude researched NF/SWN clinics and compiled the directory. It drafted three complete CME curricula, two clinic designation standards, and more policy documents than I can easily list. I reviewed every word against my own clinical knowledge, my personal relationships with the researchers doing this work, and the standard I set from the beginning: every medical claim on this website must be backed by a citable published source. That standard is mine. I enforced it.

When Claude wrote “NF clinics” instead of “NF/SWN clinics” erasing schwannomatosis patients from our own foundation’s language, I caught it. I know that erasure from the inside. There were also moments when the AI’s advice was simply wrong, and I knew it was wrong before it finished the sentence, and I said so. Instincts built from fourteen years inside this experience are not something a language model will carry.

What Claude cannot do is access anything on his own. It cannot log into the database, read member records, open email, or touch any external system without my direct instruction. Every piece of data that went into this foundation’s systems, every clinic record, every member account, every idea posted to the Round Table, was entered or approved by me. Claude can write the code that connects to those systems, and it reads the errors I copy and paste back to it, but it sees only what I show it and acts only when I run the command. The database is mine. The members are mine to protect. Claude is a very capable instrument, and I am always in the room.

What it gave me was capacity. The heavy lifting, the research, the typing, the building, the drafting, handled by something that doesn’t have pain flares. So that I could do the work that cannot be delegated: the thinking, the directing, the deciding, and the knowing.

Everything on this website reflects decisions I made. The mission is mine. The voice is mine. The domain knowledge is mine. AI is the instrument. I am the author.

This foundation is not the only thing I am building with AI. My crochet pattern business has been slowed for years by a problem that sounds small and is not: turning a design my daughter and I draw into a publishable pattern with video instructions requires so many steps that finishing one pattern leaves me exhausted for weeks. I am now using AI to build software that does it in a single click. I am excited to deploy it, and a little terrified.

I am telling you this because I believe rare disease patients and advocates deserve to know that this kind of infrastructure is buildable now, even from a body that doesn’t always cooperate, even without a team, even from the hours between the bad days.

If you need a mission worth building toward, the tools exist to help you build it. The Order of the SWNs Foundation was built; line by line, page by page, section by section; by one patient who needed help and could not find it. I knew that if I was ever lucky enough to get better, I would fight to make sure others were not left alone like I was. There were logical ways to make SWNs known and I thought I could do something about it, only if I had the ability.