Last weekend, in the very heart of the Disney World (Orlando, Florida)
a conference on CCHS took place, where the show of the film “Our Curse” was on the agenda.
The whole Leofamily was invited but going there together was unfeasible,
Leomom was delegated.
Several dozen people ill with CCHS and their families participated.
The truth is that Ondine strikes with different force.
Some of the people do not look ill at all – they are absolutely independent,
they have finished studies, they work, practice sport,
live alone, have their families, travel.
Unfortunately – not all of them.
Everything depends on the mutation of PHOX2B gene and proper medical care,
the awareness of the people in the health-care system, families and nurses of the sick.
In Poland situation is bad, and the effect of this bad situation can be grave.
By neglect, lack of knowledge,
lack of concentration a person with CCHS can irreversibly lose any chance for normal life.
Leoparents know it from their own experience
and several situations like that from their past history makes them unable to sleep.
Well, lest drop this digression here…
The general message of the Conference was super positive.
The view of several dozen children with CCHS and tracheostomies
diving in a swimming pool (Yes!!!!) warmed cockles of her heart.
The projection of the film itself was a priceless experience.
Right from the first sentence,
the audience reacted with loud laughter and continued to do so now and then.
And they clapped their his during the projection because,
as many poplar told Leomom later: We’ve been there!
Whether they came form the States, Mexico, Israel or Denmark
– they all went through the same inferno.
The film moved them 5, 10, 15 or 20 years back,
when they were sitting on their sofas and repeated the mantra of
"I don't know...I don't know..."
In the end half of the cinema hall were weeping.
And now the most important thing is new discoveries
and recommendations pertinent to CCHS:
1. It was a gossip that the research on Desogester proved to be a dead-end way!!!!
The reason why the research was halted was financial.
It is planned to have the tests re-launched!
2. An alternative, non-invasive method reducing symptoms of CCHS is being developed
– that means the way to trigger one's breathing during sleep!
For a while this research is top secret, results – in about a year!!!
3. It was discovered that the brain of a person with CCHS
can respond to bad saturation of gases in some situations.
Question is: how can one enhance this reaction.
4. It is important to supplement the diet of ill people with magnesium and vitamin B!
Many ill people drink energizers for sportsmen and are very happy with the effect.
5. People suffering form CCHS must drink as much liquids as possible.
This prevents them from drops of blood pressure, which can lead to fainting.
6. Again, a special emphasis was put on the examination of the heart!
Echo and a 72-hour holter once a year is obligatory.
This is especially recommended to people with a mutation over 20/25.
Problems usually begin in teenagers, but you should be wary from the beginning
and insists on your Surgeons have to forced to have these tests performed
– they would rather not recommend them of their own accord.
A heart pacer has saved many a life to date.
7. Leomom has seen how the electrode works with her very eyes.
A certain young lady had it connected to her.
8. A very sympathetic dog participated in the conference.
He takes care of his master and does not permit him to sleep without a mask.
There is a dog training center in NY, where they teach dogs to deal with CCHS,
and the dogs are becoming increasingly popular.
9. Leomom met many adults with CCHS – happy, intelligent, absolutely normal people.
Some of them still had their tracheotomies, however, their speech was absolutely fine.
10. Nobody believed Leomom when she said that nursing care for the whole night is unavailable in Poland.
Why? How can you manage? Unbelievable!
P.S. „Our Curse” (Nasza Kl¹twa) was chosen as the Best of Fest at the Afi Docs Festival in Washington. http://afi.com/afidocs/films/bestoffest.aspx#.U7GWvZSSxyE