Friends For Arex Ikehara
Donation protected
It’s a lot of info. But we would like close friends and family to understand more about Arex’s challenges.
As a musician/song writer, teacher, coach, artist and athlete Arex always strives. From tennis and paddling to the gym, he leads an active lifestyle.
In September 2018, Arex was diagnosed with a rare disorder called Neuromyelitis Optica (NMO).
What is a Rare Disease?
A rare disease in the US is defined as affecting fewer than 200,000 people. There are an estimated 4,000 people with NMO in the United States and a quarter-million people worldwide.
Rare diseases can be very complex to treat due to lack of understanding, little to no options for treatment and limited funding.
But it is for these reasons that raising awareness and supporting research and funding for rare diseases is so important.
What is NMO?
NMO stands for Neuromyelitis Optica, which is an autoimmune disease that causes inflammation and demyelination in the brain, spinal cord and eyes. (An autoimmune disease is where the body attacks and damages its own tissues and creates antibodies to destroy these tissues and organs.)
Demyelination, a key aspect of NMO, is the destruction of myelin, the protective covering of nerve cells around the spinal cord. When the myelin surrounding a nerve cell is destroyed, the cell loses the ability to effectively transfer signals to the body.
The combination of inflammation and demyelination leads to NMO “attacks,” which is how NMO presents itself. Each attack can destroy more and more myelin and lead to long term damage.
Once a person has suffered from an NMO attack, it is likely that attacks will occur in the future. Severe and frequent attacks can lead to blindness, paralysis, numbness, and loss of control of bladder and bowel function, and the effects are often irreversible.
Since there is currently no cure for NMO, the goal for treatment is to limit the number of attacks.
How is it diagnosed?
One of the challenges with NMO is that people do not know they have it until they experience an attack.
The only way to diagnose NMO is to test the patient for anti-AQP4 (antibodies), and the test will only come back positive after an attack. This means there is no way to prevent NMO, there are only ways to test for it and manage the attacks after the patient tests positive.
Another challenge is that NMO patients are often misdiagnosed with MS. NMO and MS both involve the deterioration of myelin in the central nervous system but the treatments are different. While the symptoms are similar, NMO attacks tend to be more severe and less reversible, making early detection and treatment of NMO critical.
What research is being done?
As with many rare diseases, very little is known about what exactly causes NMO, making it difficult to prevent.
Drs are accessing the affordability of NMO diagnostic testing and treatment. Each diagnostic test is estimated to cost about 200 dollars, while one novel treatment is estimated to cost about 500,000 dollars per year.
Drs are proposing to partner with pharmaceutical companies for disease education outreach to increase affordability of NMO diagnostic testing and treatment equity around the globe.
Please JOIN US as
“Friends For Arex”
Raise awareness, Show support, Make donations, Share music and Fellowship on:
Sunday, July 7, 2019
at: Gordon Biersch
from: 5:00p-9:30p
Funds raised will go directly toward Arex’s medical expenses.
A portion will be donated to the TMA (Transverse Myelitis Assn) for NMO research.
As a musician/song writer, teacher, coach, artist and athlete Arex always strives. From tennis and paddling to the gym, he leads an active lifestyle.
In September 2018, Arex was diagnosed with a rare disorder called Neuromyelitis Optica (NMO).
What is a Rare Disease?
A rare disease in the US is defined as affecting fewer than 200,000 people. There are an estimated 4,000 people with NMO in the United States and a quarter-million people worldwide.
Rare diseases can be very complex to treat due to lack of understanding, little to no options for treatment and limited funding.
But it is for these reasons that raising awareness and supporting research and funding for rare diseases is so important.
What is NMO?
NMO stands for Neuromyelitis Optica, which is an autoimmune disease that causes inflammation and demyelination in the brain, spinal cord and eyes. (An autoimmune disease is where the body attacks and damages its own tissues and creates antibodies to destroy these tissues and organs.)
Demyelination, a key aspect of NMO, is the destruction of myelin, the protective covering of nerve cells around the spinal cord. When the myelin surrounding a nerve cell is destroyed, the cell loses the ability to effectively transfer signals to the body.
The combination of inflammation and demyelination leads to NMO “attacks,” which is how NMO presents itself. Each attack can destroy more and more myelin and lead to long term damage.
Once a person has suffered from an NMO attack, it is likely that attacks will occur in the future. Severe and frequent attacks can lead to blindness, paralysis, numbness, and loss of control of bladder and bowel function, and the effects are often irreversible.
Since there is currently no cure for NMO, the goal for treatment is to limit the number of attacks.
How is it diagnosed?
One of the challenges with NMO is that people do not know they have it until they experience an attack.
The only way to diagnose NMO is to test the patient for anti-AQP4 (antibodies), and the test will only come back positive after an attack. This means there is no way to prevent NMO, there are only ways to test for it and manage the attacks after the patient tests positive.
Another challenge is that NMO patients are often misdiagnosed with MS. NMO and MS both involve the deterioration of myelin in the central nervous system but the treatments are different. While the symptoms are similar, NMO attacks tend to be more severe and less reversible, making early detection and treatment of NMO critical.
What research is being done?
As with many rare diseases, very little is known about what exactly causes NMO, making it difficult to prevent.
Drs are accessing the affordability of NMO diagnostic testing and treatment. Each diagnostic test is estimated to cost about 200 dollars, while one novel treatment is estimated to cost about 500,000 dollars per year.
Drs are proposing to partner with pharmaceutical companies for disease education outreach to increase affordability of NMO diagnostic testing and treatment equity around the globe.
Please JOIN US as
“Friends For Arex”
Raise awareness, Show support, Make donations, Share music and Fellowship on:
Sunday, July 7, 2019
at: Gordon Biersch
from: 5:00p-9:30p
Funds raised will go directly toward Arex’s medical expenses.
A portion will be donated to the TMA (Transverse Myelitis Assn) for NMO research.
Organizer and beneficiary
Joy Waikoloa
Organizer
Honolulu, HI
Arex Ikehara
Beneficiary