Adapted from my GoFundMe Page: Help Krys Beat Multiple Sclerosis
I’m currently facing the biggest fight of my life, and urgently in need of a Bone Marrow Stem Cell Transplant procedure to halt my aggressive Multiple Sclerosis (MS).
Every bit of support will bring me closer to getting the treatment I really need, and allow me to finally plan a future, support my family, and fulfill my life’s mission as an educator and scholar.
In 2008, I was diagnosed with Multiple Sclerosis (MS), an incurable, neurodegenerative condition in which the immune system attacks the central nervous system.
With each attack, or flare ups, comes up the possibility for increased disability. Since my diagnosis at the age of 20, when I was midway through college, I’ve had to continually readjust to lower and lower thresholds of functional ability, and heightening levels of pain and fatigue.
Now, things have reached a new level of urgency as I find myself less and less able to do things I’ve always loved to do–such as read, write, teach, travel, and exercise. These are activities I’ve always taken for granted, and form a critical part of my identity.
Writing about these things is difficult for me, not only because of the vulnerability it entails, but also because I’m already so familiar with stories of pain and suffering.
As a former educator and community organizer, I used to work with various marginalized communities in New York and Providence, RI–working, particularly, with immigrants, housing-insecure tenants, and queer youth of color.
In that work, I met countless struggling families and resilient youth who had harrowing stories to tell–the types of stories that compel you to continue that kind of work!
I’m also the child of working-class immigrants from Honduras and Puerto Rico, and have seen first-hand the impacts of institutional and environmental racism on my family.
In other words, in the context of everything my community was facing, speaking up about my own issues with MS seemed trivializing and possibly selfish.
But MS progression has been catching up with me. It has slowly eroded more and more of my independence, taking a huge toll on my quality of life. Worst of all, it has been undermining my ability to do the things I love.
Although I have immense educational privilege–having been the first person in my family to finish college and attend graduate school–the disease and my particular situation have left with me few support systems.
For one thing, I’m chronically sick, single, and from a working-class background (my parents were both maintenance workers in New York).
Last year, my income hovered around the poverty line as I struggled to keep up with work as a PhD student–and leaving school isn’t an option at the moment since it would mean losing my insurance and livelihood. I also have little family in the U.S. outside my elderly parents, who live in a different coast.
All these factors have contributed to a decline in my health, and have led me to make a very public plea for help from my community.
Here, I’m asking for your support in beating MS–before it progresses to a point of being uncontrollable.
Living With MS:
Imagine this: instead of wondering about a future career, family, or romantic life, you wonder, instead, if you’ll be able to walk next year.
Or if you’ll be able to feel your hand in the morning when you wake up. Or able to sustain enough energy to get through an important exam. Or able to support your elderly parents and sick brother as they get older.
This, unfortunately, is my predicament.
For me, one of the most challenging parts of living with MS is that it’s a notoriously unpredictable and commonly misunderstood illness.
We can understand MS this way: Since I have the more common relapsing-remitting variant of MS, my T cells target the insulating layers, or myelin sheath, of brain and spinal cord neurons. This attack causes inflammation that results in damaged and severed nerves, as well as scar tissue (sclerosis) noticeable in MRI scans.
Given that MS is one of the several hundred known autoimmune conditions, we can also think of my body as always at war, attacking myelin if it were foreign invader.
The result of these successive autoimmune attacks is a long list of disabling symptoms that I struggle with daily: everything from chronic nerve pain, fatigue, numbness, blindness, tremors, and paresthesias, sensitivity to heaty, light, and sound, as well as issues with mobility and cognition.
Adding to the challenges is the sheer invisibility and difficult-to-describe quality of most of my symptoms, often impeding understanding and empathy.
As I’ve learned before, rare neurological conditions can also accelerate quickly, leaving little time for pre-planning. And having exhausted most of my reasonable and affordable options for the treatment of my aggressive MS, I’ve been cornered into an impossible situation:
Either I bear the costs and risks of one of the most aggressive (but effective) treatments available for MS today, or accept, with little exaggeration, a steady progression of disability and diminished quality of life.
A Decade of Growing Disability:
As I enter my thirties this year, I’m made aware of the strange fact that I’ve spent a full third of my life—and the vast majority of my adult years—living with an active neurodegenerative condition.
Looking back, this past decade has read like a map of strange medical upsets: for stints lasting mere minutes to months, I’ve found myself half-blind, deaf, partially paralyzed, immobile, crippled by severe migraines and vertigo, and even—as happened in one scary incident —left unable to speak or swallow.
Since I was diagnosed with the most common form of MS—one that follows a pattern of relapses and remittances—it wouldn’t be unfair to say that I’ve spent the past ten years adjusting and re-adjusting to a sequence of body-altering flare ups .
Seven years ago, when I had a particularly heinous flare, the nerve damage in the back of my head and neck led to an injury so long-lasting that I’ve needed a special drug regimen to manage the pain from that event.
In a number of other cases, I’ve had vertigo and migraines so severe I’ve needed to be hospitalized. Oftentimes, these happen with little forewarning, putting me out of commission for days and weeks at a time and unable to do some of the most taken-for-granted activities–like reading, watching TV, or even falling asleep.
Given symptoms like these, I did everything within my power to take control over my MS. Rather than having a conventional twenty-something trajectory of multiple jobs, a dating life, and advancement in a chosen career, I’ve instead spent many of these years living day to day, migrating from one doctor to another in the hopes of finding relief.
Without question, I’ve spent several thousands of dollars over the good part of a decade trying a long list of different medications, treatments, supplements, and exercise regiments, only to limited avail as the MS continued to snowball.
It has also been a uphill battle with insurance companies, doctors, pharmacists, disabilty specialists, even my own body.
MS is also usually progressive , and now that I’m reaching the ten-year mark, I face a shrinking supply of available treatment options. MS progression has occurred even in spite of accessing treatment in some of the most reputable MS clinics in the U.S. (NYU and USC), and despite having tried some of the most powerful FDA-approved medications available (Tysabri, Gilenya, Ocrevus).
But there’s no question: I need to be aggressive in treating my MS, before the neurodegeneration becomes unmanageable.**
By and large, the existing disease-modifying treatments do not reverse damage already caused by MS. They do not magically re-myelinate neurons. They do not come anywhere near ‘cure’ status as stand-alone treatments. And to the extent that they’re effective at all, the most they’ve ever been able to do is pre-emptive: stopping things from getting worse**.
They come no where close to stem cell treatment, which has been proven to be aggressive but effective.
Halting the Progression:
When a friend advised me to look into clinical studies, I was incredibly skeptical. Although I knew many standard treatments started off clinical studies, I felt the odds, given their ‘experimental’ nature, made them unlikely to be helpful.
It was around this time that I learned about a procedure that has been surprisingly effective for people with aggressive MS: a bone marrow stem cell transplantation (HSCT) procedure that works on “rebooting” the immune system, preventing it from further damaging the brain and spinal cord.
The more I studied the impacts of HSCT on MS, the more my resistance to experimental trials started to wear down. Skepticism slowly turned into astonishment and even hopefulness as I communicated with people online who went through the procedure, including this BBC reporter with MS.
In HSCT, the overall idea is quite simple: since an MS patient’s immune system is faultily primed to attack myelin, one could, in principle, re-calibrate immune memory by abolishing all record of ‘myelin’ as a foreign invader. HSCT, specifically, uses the stem cells of harvested bone marrow to rebuild the immune cells (including T and B cells) destroyed during low-intensity chemotherapy.
In recent years, a plethora of studies have been published supporting HSCT as an effective and promising treatment for MS, particularly for younger patients earlier on their disease (see: Latest News about HSCT at the National Multiple Sclerosis Society page).
Hundreds of people have already done it in clinics around the world, including a famous one at Chicago’s Northwestern University. (Also see: articles, links, and research about HSCT on my personal web page.)
Unfortunately, neither insurance nor research funds currently cover HSCT for MS for most patients. And while there are clinics that currently do the procedure, all have high out-of-pocket costs, including a cost of more than a $150,000 in Chicago.
(And while HSCT may become an approved treatment in 15-20 years, I know I can’t wait that long.)
Following months of research into this, I’ve decided to do my stem cell transplantation in a highly-regarded clinic in Puebla, Mexico (Clínica Ruiz), where hundreds of HSCT procedures have been performed by award-winning doctors since the 1990’s.
Friends and beloved community, this is the breakdown of the costs:
Includes bone marrow surgery, low-intensity chemo, and a month-long residence in the clinic (see also my web page for cost breakdown):
Travel costs include flights to New York, San Diego, and Puebla between my parents and I, as well as lodging and other costs for my parents (who will be my mandatory companions) during their stay in Mexico:
Includes costs for prescription medications as well as COBRA for continued health insurance coverage (since my student insurance will be cut during my medical leave):
Although I originally scheduled the bone marrow transplant in Clínica Ruiz for June 2018, due to a lack of funds I’ve decided to spend the upcoming year fundraising (tentatively scheduling the same procedure for June 2019).
Given that this is one of my last hopes of slowing the progression of my aggressive MS, there is no question for me whether or not it’s worth the time, energy, and monetary burden. Since investigating HSCT and communicating with countless individuals online who have done this procedure, I’ve been feeling incredibly hopeful for the first time in a long time.
Your support will help me plan a future and pursue my life’s mission: I want to complete my doctoral work at UC San Diego, continue my research on Central American migration to the U.S., and get back to community organizing and advocating for immigrant rights, housing justice, and the rights of LGBTQ youth.
In The Cancer Journals, Audre Lorde once wrote about how the love of her community kept her alive in her final years. Specifically, she writes how “without community there is certainly no liberation, no future.”
As I continue to work on this medical fundraiser, I feel this more intensely than ever. The love and support of my community will keep me alive, help me plan a future, and enable me to keep fighting for all of us.
I know we can do this!
Thank you for taking the time to read my story and donating. I am humbled and honored by the friends and family who have supported me.
Krys Méndez Ramírez
Other Ways to Donate:
Via VenMo @KrysMendez88
Please write “Medical Fundraiser” in the description, and whether or not you want to be anonymous. Unless you specify otherwise, I will assume you won’t mind being listed as a donor on GoFundMe, once those funds are transferred over.
A lesser-known option is to wire funds through Ugift (https://www.ugiftable.com), a platform that enables people to wire funds to ABLE accounts. Log onto ugiftable.com and enter my personal code of “E9D-E69.” The advantage of Ugift is that it wires the funds directly to the ABLE account, and without transfer or platform use fees. I will then add the donated amount to the GoFundMe page for accountability purposes.
See also: Ugift FAQs: https://www.ugiftable.com/home/faqs.html
FYI: The temporary Facebook fundraiser will close down over the summer. Donations sent here will also be added to the GoFundMe page. It’ll be too laborious to enter individual amounts, so I will enter the total amount donated here, listing it as “Facebook fundraiser.”
Additionally, all donations through GoFundMe will go to an ABLE account , which functions somewhat like a trust fund for people with disabilities.***
More about the campaign to help Krys beat MS can be found here: https://www.facebook.com/krysbeatsms/
More writing about my battles with MS can be found on my personal site, https://krysmendez.com/.
You may also contact me at firstname.lastname@example.org if you would like to volunteer your time and services, media contacts, etc.
(You can also read my personal plea to community on my Medium page.)
Since I love to research, I’ve created a page for latest stories and research on stem cell treatment for MS. This also includes news articles, videos, and links to previous HSCT fundraisers.
See published research articles on HSCT as an effective treatment option for MS, including from The Lancet and the American Academy of Neurology.
Please Note: I also hope to upload a number of review studies supporting HSCT as an aggressive treatment option for MS, along with transparency documents and anything else I feel may be of interest to community members.
** In cases like mine, where enough damage has likely gone underway, these medications are even less effective. This was explained to me years ago by my first MS specialist at NYU, before many review studies confirming the efficacy of bone marrow stem cell transplants for MS were published.
With MS, you have a critical window, particularly in the early stages, in which your central nervous system is supple enough to re-bound from the type of injury MS flares cause. Speaking of relapse-related damage, I recall him telling me how there’s just “not much you can do once the horses have fled the barn.”
In other words, as the disease progresses and more and more flares occur, the condition becomes increasingly unmanageable, and is the main reason why the bulk of pharmaceutical treatments for MS focus on prevention. Once it reaches a stage of continual progression, treatments available become less helpful. (In fact, only one treatment, Ocrevus, has been FDA-approved for progressive MS–and that was just last year).This focus on prevention has led many neurologists specializing in MS to conclude that the more aggressive the treatment, the better.
***According to CalABLE: “An ABLE Account is an investment account available to Eligible Individuals with disabilities. ABLE Accounts are made possible by the federal Achieving a Better Life Experience (“ABLE”) Act of 2014. ABLE Accounts allow individuals with disabilities to save and invest money without losing eligibility for certain public benefits programs, like Medicaid and Social Security Income (SSI).”