Help Joe Defeat His Disabilities!

For a very long time, Joe has been putting up an incredible fight, independently supporting himself while living with serious, disabling medical conditions. He had not been able to get any diagnosis or effective treatment, until just recently. Now he knows he's been suffering from four conditions, which are probably interrelated to some extent: Functional neurologic disorder (FND), sleep apnea, atypical trigeminal neuralgia (ATN), and ankyloglossia. And now that he finally knows what's wrong, he's started getting the right care to fix it. Joe is on the way to winning his long fight, but now financial issues are threatening to take him down, and he needs help.

Joe is currently at risk of losing his housing September 1st. Being unhoused while dealing with his chronic illnesses would be a very difficult situation to recover from. With your immediate help he can pay rent and have at least another month to work on finding employment and additional help. Read on to learn more about his struggle and his potential.

We have known Joe through his college education (we were both physics professors at CSU when Joe was going through the program: https://www.physics.colostate.edu/about/people/martin-gelfand/ and https://www.physics.colostate.edu/about/people/kate-ross/), both having taught him and

worked with him on extra projects, and have seen his hard work and determination first-hand.

JOE'S HARDSHIPS

For approximately fifteen years, Joe has been living with 'invisible' disabilities that cause debilitating physical and mental symptoms, including chronic pain, difficulty breathing, brain fog, fatigue, difficulty with physical activity, and so much more. During that time, he sought help from many healthcare providers, but until recently those efforts were unsuccessful. To get some idea of how difficult it has been for Joe, imagine what it would be like to try to live your everyday life with a broken rib that never heals. His symptoms are different from that, and much more complex, but altogether they've been about as bad. Try to imagine living like that day after day, year after year, with no effective medical treatment, no diagnosis, no one to help take care of you, and no access to any sort of disability benefits or accommodations. Joe has been living that way for about fifteen years.

Joe's fight against adversity goes back even further than that. It's been lifelong. He's a survivor of long-term child abuse and neglect. There was no one around to teach him basic life skills when he was growing up. On his eighteenth birthday, his father kicked him out of the family home. He had no money, no car, and no one turn to. A couple years later, his mother stole over $1,000 from him. These kinds of experiences are a major risk factor of FND (which might be surprising, since the symptoms are very physical). On top of everything else, he's also on the autism spectrum, which has made it hard for him to figure out how to socially navigate the world all by himself while living with his symptoms.

JOE'S INCREDIBLE FIGHTING SPIRIT

Joe has always been determined not to let his life be defined by his problems. He dropped out of high school at sixteen, but later earned a GED. He then attended college, and graduated summa cum laude with a perfect GPA while also working on research problems with us (impressively handling complicated projects), enduring his symptoms the whole time. Since then, he's consistently been recognized by colleagues as a high performer during his three years of working in the tech industry.

Joe has been extremely persistent in trying to find out what's causing his symptoms. During the last year or so, those efforts finally paid off. He finally found his way to medical specialists who were able to recognize what's wrong and diagnose it.

This was a huge win. He's already had a lingual frenuloplasty to fix the ankyloglossia, and he's having myofunctional therapy for the myofunctional oral impairment left over from the condition. This has resulted in a significant improvement in some of his symptoms. And he's working on getting the other conditions taken care of. It looks like this is the beginning of Joe's recovery.

WHY JOE NEEDS HELP NOW

Joe's perseverance is extraordinary, but that has not been enough to eliminate the impact of his disabilities over the years. There have been ups and downs. He had to withdraw from graduate school, he's had long periods of non-employment, he's faced housing insecurity and harmful living conditions, and he's had a lot of healthcare expenses.

His finances have suffered over time. He's at risk of bankruptcy, with over $150,000 in debt, including over $60,000 which is in default. He was recently laid off, and is currently unemployed. As of this writing, he only has enough money to get through the current month. He doesn't have enough to pay next month's rent. Without our help, Joe will be at risk of losing his home, most of his possessions, his access to desperately needed healthcare, and so much more of what he has worked so hard for over the years of his incredibly difficult life.

He's been searching for a new job, because he hasn't seen any other option. Joe has often had no choice but to work full-time despite his symptoms, which is very stressful and absolutely exhausting for him. Not only does this have a direct negative impact on his well-being; it also makes it very hard for him to get much else done.

And managing his health, in this stage, requires quite a bit of time and effort from him. Joe hopes to find practitioners who can take that burden off his shoulders, but for now, it looks like getting the right combination of care may require him, with no medical training of his own, to put together the right healthcare team through his own independent research and trial-and-error. There are two main reasons for this.

The first reason is that Joe has an unusual combination of conditions, which fall under different medical specialties, and probably affect each other in various ways. The whole problem seems to be bigger than the sum of its parts, and Joe hasn't found a doctor with the expertise to manage the whole problem on a big-picture level by picking the right specialists and coordinating the care they provide.

The second reason is that FND, just by itself, poses similar problems. It tends to be a challenging condition to treat, and there aren't many practitioners with expertise in it. The best outcomes usually come from a multi-pronged approach that includes multiple types of treatment from, again, different specialties. And again, Joe hasn't found anyone who can help him collect those different pieces and put them together.

The funds we raise will be used to save Joe from the immediate danger of running out of money, to give him time to heal before he starts working again, to cover his current & future healthcare costs as well as any other expenses that might arise in connection with his health problems, and to help pay down his debt.

IN CLOSING

Anything you can donate will help. And whether you donate or not, you can also help a whole lot by sharing this fundraiser page with as many people as you can, and asking them to share it with as many people as they can, too.

Joe is so close to finally winning his lifelong fight. Let's help him keep his feet under him!