My best friend Tony needs our help. A reaction to a medication has left him living with endless cycles of complete skin loss. This condition is called Erythrodermic Syndrome. Without help, each of these cycles are literally life threatening. He needs the resources to get to the specialists who can offer plausible treatments and help stop or decrease the severity of these cycles
Hit the READ MORE to see Tony's story.
WHO HE IS.----WHAT HAPPENED.----WHAT HE NEEDS----WHAT IS THE PLAN---
_______________________________________________________________________________________
This is Tony, my best friend of over 30 years and a truly great guy.
Tony's early life in Kauai, Hawaii.
PLEASE LISTEN TO TONY IN HIS OWN WORDS. Click on picture below !! CLICK PICTURE BELOW
CLICK PICTURE TO HEAR TONY IN HIS OWN WORDS (click picture above)
Born November 13, 1967, California, USA.
Tony is a trained and experienced, professional, who through hard work and genuine sincerity was successful in all his endeavors. Tony was always active with family, friends, work, church, education, recreation, hobbies, local sports leagues, animal rescue and volunteering . Tony was socially and professionally active and responsible.
He did the right things. The things that help promise the American dream.
* Graduated High school with good grades and sports accolades. Worked through his higher education and was key man in several startup companies who still employ many to this day. Stayed out of trouble and helped others his entire life. He was hired by The Boeing Company, where he was manager for hundreds of millions worth of their most essential computer equipment used to design aircraft.
-------------------------- WHAT HAPPENED------------------------------
Tony had a massive reaction to taking a medication. He had to be hospitalized in the Burn Unit at UCSD.
Tony's entire body feels and looks like a 2nd degree burn.
Unfortunately, that was only the very beginning. Tony would go on to have dozens of these severe events and many weeks in hospitals.
It took 2 weeks and a complete severe burn treatment course to bring Tony back from near death. He had lost 95% of the skin from his entire body. The steroids he was on made his entire body puffed up and severely inflamed. This syndrome is something that 7 in 10 do not survive.
The medication permanently changed a key part of Tony's immune system, so that his body now saw any skin previously damaged as needing full loss and replacement over and over in endless cycles.
He loses the entire souls from the bottom of both feet every 3 months. It takes 2 months to heal.
Tony's life now consists of a 3 month excruciating skin loss events including 4-6 weeks of skin destruction, peeling and bleeding, then 8 to 10 weeks of slow healing itching and saline wraps, until finally a 2 to 4 weeks break in between "flare ups" before another cycle of skin destruction starts all over again.
---------------------------LOSING (almost) EVERYTHING-------------------------------
Tony lost his Career at The Boeing Company and was then cancelled by the Aetna health, life and disability insurance which he paid for, for many years and was supposed to follow him until at least age 65.
Because of this rare disease, Tony exhausted his 401K retirement, sold his house, his car, all his investments and everything we all work our whole lives to build for a decent future. He took such good care of himself, eating well and keeping active with his family friends and pets. It's hard to see the startling difference in his skin and the pain he endures. But he hasn't had many choices.
Tony's back during the start of a "skin loss event" These events are non-stop and last three months each.
Most people with this severity of the illness don't survive more than a few of these "skin loss events"
--------------------WHAT HE NEEDS--------------WHATS THE PLAN-----------------
With the advent of these fantastic group funding sites, Tony has HOPE for the first time in many years. This could be a possible new lease on life. We have found several world renowned doctors across the USA and abroad that specialize in the Immune cells (Interleukin) that were damaged by the medication Tony took. We have contacted the drug manufacturer of Stelara (Johnson and Johnson) several times but to not avail.
Tony loses over 4 or 5 layers of skin per day. He suffers such intense pain it's inhumane!!
Tony is very susceptible to infection and illness because of his missing his skin which is the body's first line of defense against germs. We have found a solution to the travel, months of housing, preparation of food and control of a sanitary living he requires while on the road.
If we can get to these physicians, they will donate their time. But we need to pay for tests and possible treatments. We also want to travel to Washington D.C. to lobby our representatives, because since Tony's reaction, we have learned that this is happening to many others who are exposed to these drugs and it needs to be addressed.
Tony's entire body puffed up on steroid treatments. He doesn't even look like the same person.
---------------- ----------ERYTHRODERMIC SYNDROME INFORMATION-----------------------
When Tony first got this, there was NO information anywhere about this type of reaction. It is now happening to hundreds of people a year. The US National Institutes of Health has even given it a name 2 years ago. Monoclonal antibody-induced cytokine-release syndrome. - and we want to bring attention to this growing disaster. It is a fact that 65% of people who suffer just ONE outbreak of this skin loss event die from it. Tony has somehow endured several dozen individual skin loss episodes. I wonder if these MAB (Moniclonal Antibody, Immuno therapy Treatments) drugs pose a threat to public health? Just listen to the "warnings" of these drug commercials.
Tony's hands and legs missing skin during a summer "skin loss event". He is in excruciating PAIN all the time.
I asked Tony to make a message to post here. What he made, took my breath away. It's a recording telling the story in his words and includes a photo slide show. Please click on the third picture from the top and, press the play button in the middle of the photo!
Tony and his late grandmother were extremely close. She became ill while he was in the burn unit and then she passed away just months later.
--------------------------THANK YOU FOR YOUR SUPPORT--------------------------
Please consider giving to our cause.
It will allow Tony the best chance that he has had since this began, and will also allow us to shine some light on these rare new illnesses that are increasing drastically from people taking certain types and groups of medications (Tony's was taking STELARA (Made by J&J) but many new cases than normal are being reported.
Thank you and God Bless.........
Patrick (SPARKY)
_________________________________________________________________________
Please hear Tony's story in his own words, click on the 2nd picture from the top.
Hit the READ MORE to see Tony's story.
WHO HE IS.----WHAT HAPPENED.----WHAT HE NEEDS----WHAT IS THE PLAN---
_______________________________________________________________________________________
This is Tony, my best friend of over 30 years and a truly great guy.
Tony's early life in Kauai, Hawaii.PLEASE LISTEN TO TONY IN HIS OWN WORDS. Click on picture below !! CLICK PICTURE BELOW
CLICK PICTURE TO HEAR TONY IN HIS OWN WORDS (click picture above)
Born November 13, 1967, California, USA.
Tony is a trained and experienced, professional, who through hard work and genuine sincerity was successful in all his endeavors. Tony was always active with family, friends, work, church, education, recreation, hobbies, local sports leagues, animal rescue and volunteering . Tony was socially and professionally active and responsible.
He did the right things. The things that help promise the American dream.
* Graduated High school with good grades and sports accolades. Worked through his higher education and was key man in several startup companies who still employ many to this day. Stayed out of trouble and helped others his entire life. He was hired by The Boeing Company, where he was manager for hundreds of millions worth of their most essential computer equipment used to design aircraft.
-------------------------- WHAT HAPPENED------------------------------
Tony had a massive reaction to taking a medication. He had to be hospitalized in the Burn Unit at UCSD.
Tony's entire body feels and looks like a 2nd degree burn.Unfortunately, that was only the very beginning. Tony would go on to have dozens of these severe events and many weeks in hospitals.
It took 2 weeks and a complete severe burn treatment course to bring Tony back from near death. He had lost 95% of the skin from his entire body. The steroids he was on made his entire body puffed up and severely inflamed. This syndrome is something that 7 in 10 do not survive.
The medication permanently changed a key part of Tony's immune system, so that his body now saw any skin previously damaged as needing full loss and replacement over and over in endless cycles.
He loses the entire souls from the bottom of both feet every 3 months. It takes 2 months to heal.Tony's life now consists of a 3 month excruciating skin loss events including 4-6 weeks of skin destruction, peeling and bleeding, then 8 to 10 weeks of slow healing itching and saline wraps, until finally a 2 to 4 weeks break in between "flare ups" before another cycle of skin destruction starts all over again.
---------------------------LOSING (almost) EVERYTHING-------------------------------
Tony lost his Career at The Boeing Company and was then cancelled by the Aetna health, life and disability insurance which he paid for, for many years and was supposed to follow him until at least age 65.
Because of this rare disease, Tony exhausted his 401K retirement, sold his house, his car, all his investments and everything we all work our whole lives to build for a decent future. He took such good care of himself, eating well and keeping active with his family friends and pets. It's hard to see the startling difference in his skin and the pain he endures. But he hasn't had many choices.
Tony's back during the start of a "skin loss event" These events are non-stop and last three months each.Most people with this severity of the illness don't survive more than a few of these "skin loss events"
--------------------WHAT HE NEEDS--------------WHATS THE PLAN-----------------
With the advent of these fantastic group funding sites, Tony has HOPE for the first time in many years. This could be a possible new lease on life. We have found several world renowned doctors across the USA and abroad that specialize in the Immune cells (Interleukin) that were damaged by the medication Tony took. We have contacted the drug manufacturer of Stelara (Johnson and Johnson) several times but to not avail.
Tony loses over 4 or 5 layers of skin per day. He suffers such intense pain it's inhumane!!Tony is very susceptible to infection and illness because of his missing his skin which is the body's first line of defense against germs. We have found a solution to the travel, months of housing, preparation of food and control of a sanitary living he requires while on the road.
If we can get to these physicians, they will donate their time. But we need to pay for tests and possible treatments. We also want to travel to Washington D.C. to lobby our representatives, because since Tony's reaction, we have learned that this is happening to many others who are exposed to these drugs and it needs to be addressed.
Tony's entire body puffed up on steroid treatments. He doesn't even look like the same person.---------------- ----------ERYTHRODERMIC SYNDROME INFORMATION-----------------------
When Tony first got this, there was NO information anywhere about this type of reaction. It is now happening to hundreds of people a year. The US National Institutes of Health has even given it a name 2 years ago. Monoclonal antibody-induced cytokine-release syndrome. - and we want to bring attention to this growing disaster. It is a fact that 65% of people who suffer just ONE outbreak of this skin loss event die from it. Tony has somehow endured several dozen individual skin loss episodes. I wonder if these MAB (Moniclonal Antibody, Immuno therapy Treatments) drugs pose a threat to public health? Just listen to the "warnings" of these drug commercials.
Tony's hands and legs missing skin during a summer "skin loss event". He is in excruciating PAIN all the time.
I asked Tony to make a message to post here. What he made, took my breath away. It's a recording telling the story in his words and includes a photo slide show. Please click on the third picture from the top and, press the play button in the middle of the photo!
Tony and his late grandmother were extremely close. She became ill while he was in the burn unit and then she passed away just months later.--------------------------THANK YOU FOR YOUR SUPPORT--------------------------
Please consider giving to our cause.
It will allow Tony the best chance that he has had since this began, and will also allow us to shine some light on these rare new illnesses that are increasing drastically from people taking certain types and groups of medications (Tony's was taking STELARA (Made by J&J) but many new cases than normal are being reported.
Thank you and God Bless.........
Patrick (SPARKY)
_________________________________________________________________________
Please hear Tony's story in his own words, click on the 2nd picture from the top.