Minidoc about Horton's and oxygen coming up on CHAD 2020

[Tony Only]

 

[spiny]

Thank you Tony! I look forward to more!!!

[Tony Only]

Here we go !

 

[Pebblesthecorgi]

Very nice production.  I wonder if calling an ambulance is really helpful in a established cluster person?  Distances may be reduced in Finland but in the US by the time they get there and if you can talk them into O2 the attack is gone.  Supportive understanding care which means "leave mean alone and dont overreact" rules if you are caught away from O2

 

[Tony Only]

On 3/21/2020 at 5:58 PM, Pebblesthecorgi said:

Very nice production.  I wonder if calling an ambulance is really helpful in a established cluster person?  Distances may be reduced in Finland but in the US by the time they get there and if you can talk them into O2 the attack is gone.  Supportive understanding care which means "leave mean alone and dont overreact" rules if you are caught away from O2

 

I understand this might seem odd to everyone who is familiar with clusters and treatments. When we started the production this video was supposed to go to hospitals, police, security personnel etc. only to be distributed in their internal information channels. We decided to make it public as we went but it is still targeted to those who are unaware about clusters and different treatments.

Majority of finnish patients we have encountered on recent 8 years our social media group has been active here have had difficulties with their attacks in public. People have been locked up, sedated by force, pepper sprayed etc. Oxygen is often not used even when one has diagnosis and/or some kind of paper with them guiding for it's use. We have kept a list of doctors who can write a script for medical oxygen - those doctors are so rare. Fastest way to get an oxygen therapy to your home is to have it used during an attack in an ambulance or in ER station (which is even slower). Distances in Finland are quite short in great part of the country or amount of ambulances on the road is so good; where I live I could get an ambulance in around 5-10-15 minutes. The ambulance presentation in video is to present the severity of the condition too. Unfortunately for some it is impossible to get oxygen at home no matter what - we can't get welding oxygen etc. in here as easily as in US because they are so regulated and permissions are almost impossible to get if you don't have a business in that field.

I think many struggle and fight it out and stay invisible. Every ambulance call is logged and the reason as well. Using them is advocating to healtcare professionals. There was an intention to place a disclaimer in the end but the mighty corona got to us and the editing venue is currently shut down.

Edited March 22, 2020 by Tony Only

[Pebblesthecorgi]

Thank you for your explanation.  I think the switch in languages gave the impression it was for a larger audience.  I understand most if not all Fins speak English.  It is horrifying to think anyone in pain would be treated so poorly by those who should be serving.  I applaud your work.

[spiny]

Keep up the excellent work Tony!!! <3

 

[Tony Only]

On 3/23/2020 at 3:40 AM, Brain on fire said:

Wouldn't hurt to have it in the U.S. I never thought of calling an ambulance just to use their oxygen or get it noted in my records. I can see how it could  make it easier to get oxygen.

Here in Finland also the emergency personnel need to be thanked. When person X has called an ambulance many times enough just to get oxygen treatment for Horton's, often the emergency personnel are involved in the process when doctor finally makes that oxygen script.

[Tony Only]

Quite a few people on this forum I would love to see join our movement if you have time and energy. Every CH advocate is a valuable consultant for this no matter where you are located.

https://sites.google.com/view/hortonyhdistys/in-english/petition-2020