Support Nkem's M.E. Treatment
Donation protected
Hi! My name is Nkem Ndefo . I’m a nurse, a midwife, and a trauma specialist. I’ve dedicated my career in service of helping people find inner resources to grow, heal, and transform their lives, focusing on some of the most vulnerable and marginalized people in my community. I've always been in the position of the helper, and it's really hard to ask, but I need your support. I have myalgic encephalomyelitis , also known as ME/CFS. This is a complex multi-system disease with no known cure.
I’ve struggled with this disease for over two decades but was only diagnosed about 9 years ago. I have a fairly mild case that relapses and remits, but the past 8 months have been tough as I’ve come to accept that I have a chronic disability and need to ask for accommodations—wheelchairs in airports, stools when I do speaking gigs, a disability parking placard. Due to a sometimes mysterious combination of efforts and environmental shifts, I’m thankfully doing slightly better right now. However, that still means mostly working from bed, strictly limiting social activities, taking supplements by the handful, and facing diminished dreams. My physical activity remains 40% reduced, and there is the constant fear that I'll relapse again.
The hardest part of this illness is that if I push myself too much in any way, my system will crash. And I don’t mean a big push, I mean walking 5,000 or fewer steps in one day. I also don't mean a little tired. I mean an unstable heart rate and body temperature, leg paralysis, deep bone pain, and swollen glands all over. I have so much I want to do in this life, and it’s a bitter pill to swallow that this illness stands in my way or, even on a better day, slows me way, way down.
I have received abysmal care from my doctors at Kaiser, racking up bills for useless office visits and testing. They have no ME/CFS specialist in the entire network, and, due to their ignorance of the disease, their doctors actually dispense harmful advice. As a result, I’ve been forced to manage this illness on my own, as best as I can, through extensive research and trial and error.
There are only 6 specialists in all of California, and I have just managed to get an appointment with one of them at the Center for Complex Disease on August 14th. Because I have Kaiser, all costs are out of pocket. After the first in-person appointment, all visits can be done remotely, but the costs are still out of my reach. The Center has generously granted me a 50% reduction on lab testing, but, even so, I need help. The testing is extensive as they look for possible contributing causes that can be treated or managed to improve my quality of life.
I appreciate any support you can give me—be it a donation, a note, or a share with your network. Thank you, thank you, thank you!
Budget:
Doctor's appointments: $3,455
Lab testing: $10,000
Travel: $155
GoFundMe credit card processing fees: $390
Total: $14,000
______________
Addendum - We made the original target!! As some of you noticed, the budget actually only includes doctor's appointments and testing but not the actual treatment. I won't know what treatment will be recommended until the first round of testing comes back. So any money raised above the $14,000 will go for whatever the doctors recommend. I'll keep you posted!! Thank you again!
I’ve struggled with this disease for over two decades but was only diagnosed about 9 years ago. I have a fairly mild case that relapses and remits, but the past 8 months have been tough as I’ve come to accept that I have a chronic disability and need to ask for accommodations—wheelchairs in airports, stools when I do speaking gigs, a disability parking placard. Due to a sometimes mysterious combination of efforts and environmental shifts, I’m thankfully doing slightly better right now. However, that still means mostly working from bed, strictly limiting social activities, taking supplements by the handful, and facing diminished dreams. My physical activity remains 40% reduced, and there is the constant fear that I'll relapse again.
The hardest part of this illness is that if I push myself too much in any way, my system will crash. And I don’t mean a big push, I mean walking 5,000 or fewer steps in one day. I also don't mean a little tired. I mean an unstable heart rate and body temperature, leg paralysis, deep bone pain, and swollen glands all over. I have so much I want to do in this life, and it’s a bitter pill to swallow that this illness stands in my way or, even on a better day, slows me way, way down.
I have received abysmal care from my doctors at Kaiser, racking up bills for useless office visits and testing. They have no ME/CFS specialist in the entire network, and, due to their ignorance of the disease, their doctors actually dispense harmful advice. As a result, I’ve been forced to manage this illness on my own, as best as I can, through extensive research and trial and error.
There are only 6 specialists in all of California, and I have just managed to get an appointment with one of them at the Center for Complex Disease on August 14th. Because I have Kaiser, all costs are out of pocket. After the first in-person appointment, all visits can be done remotely, but the costs are still out of my reach. The Center has generously granted me a 50% reduction on lab testing, but, even so, I need help. The testing is extensive as they look for possible contributing causes that can be treated or managed to improve my quality of life.
I appreciate any support you can give me—be it a donation, a note, or a share with your network. Thank you, thank you, thank you!
Budget:
Doctor's appointments: $3,455
Lab testing: $10,000
Travel: $155
GoFundMe credit card processing fees: $390
Total: $14,000
______________
Addendum - We made the original target!! As some of you noticed, the budget actually only includes doctor's appointments and testing but not the actual treatment. I won't know what treatment will be recommended until the first round of testing comes back. So any money raised above the $14,000 will go for whatever the doctors recommend. I'll keep you posted!! Thank you again!
Organizer
Nkem Ndefo
Organizer
Los Angeles, CA