What is Cystic Fibrosis?

Cystic Fibrosis is an genetic disorder that affects most glands in the body, therefore affecting the normal operations of all body parts and organs. Lungs are affected the most, causing very frequent lung infections which is the cause of death for 80% of people with the disease. Also the intestines, kidneys, liver and pancreas are in great danger. Cystic Fibrosis also causes sinus infections, poor growth, fatty stool, clubbing of the fingers and toes and infertility in males.

Cystic Fibrosis can be diagnosed through sweat testing, genetic testing and newborn screening.

Until today Cystic Fibrosis has remained incurable. Over the years various advancements in treatment have resulted in a much higher life expectancy. While 70 years ago it was very unlikely a child with CF would live past their first year, today's infants are expected to live far into their adulthood. The average life expectancy in the US was 37 to 40 years in 2010.

The most consistent aspect of therapy in CF is limiting and treating the lung damage caused by thick mucus and infection, with the goal of maintaining quality of life. Intravenous, inhaled, and oral antibiotics are used to treat chronic and acute infections. Mechanical devices and inhalation medications are used to alter and clear the thickened mucus. These therapies, while effective, can be extremely time-consuming.
Many people with CF are on one or more antibiotics at all times, even when healthy, to prophylactically suppress infection.

As the tolerance to treatment declines often lung transplants are the only option. Both lungs have to be replaced to avoid the bacteria from one lung moving into the new one.

[https://en.wikipedia.org/wiki/Cystic_fibrosis]

Letter to the President

Recently he wrote a letter to the president of Estonia regarding a change in healthcare funding where many people in need lost their already measly income.
Here's a translation of a shortened form of the letter:

Dear President of the Republic

I'm Janno. Self-thaught playwriter and director.

I'm known as the man who constantly coughs and has this very complicatedly named disease.

A few months ago I've started receiving hints that maybe it's time I should think about lung transplants. I've known all my life that in one moment that time will arrive. This year two cystic fibrosis patients got new lungs, it seems they are doing fine.

One of the said he hasn't been able to breath this good in a long time. But he also told me in the hospital that milk soup is good and don't forgive such lies easily.

For me, getting ready for a transplant would mean I'd have to fix my teeth first.

Dental care is expensive, but luckily I started a self-named fund some time ago.

I started the fund to help raise the quality of life for people with chronic diseases. The fund is funded through donations and thanks to that we have been able to supply a quite satisfying amount of cystic fibrosis patients with food supplements which they desperately need for their health. But only the doctors and patients think that, because healthcare doesn't cover these costs, it's up to us.

Especially if you have to eat a lot more to maintain a normal body weight, because the body fights against gaining weight as much as possible.

I need new teeth. I need to fix my teeth so there wouldn't be any blocks in the way when a call arrives saying "We got matching lungs for you. You have one hour to pack your bags and get to the hospital."

Fixing my teeth costs around 3000 to 4000€.

I also did normal work for many years until my health got so bad I had to find new means. I became a writer and offer my services to amateur theaters as a director. That gives me some extra money on top of my monthly 200€ pension.

I've spoken to some employers and entrepreneurs, but although they are all great and nice people, a disabled person is still too much of a risk to take for them.

It's even more somber for people who lost even that last small financial support they got. The money for food, medicine and rent.

If I'm going to get a transplant, assuming it succeeds, I'll be out for 4 months and my income will shrink only to that 200€ pension. I depend on those 200 euros.

I also think about those to whom those 200€ was the only income. They haven't received any income for many months. Their only fault was getting born into this world where they have to fight with their own body and bureaucracy to survive.

In defense of those people, I'm writing to you.

You have a big advantage. You are a woman. Women have a unexplainable amount of power. What most men fear, is a angry woman.

All that needs to be done is stand in some minister's cabinet or better yet, in front of the parliament door with hands on the hips, slam one foot to the ground and say "Can we get things done or what!"

I just want people to start laughing again, me included.

I feel there's little of that now.

Let's hope this letter reaches you.

I wish you a good spring and summer.

Don't forget to rest and relax.

Janno

Results of the public letter

Although the president didn't respond, a lot of people did.
Janno's fund gathered enough money to fix his teeth and even pay for the operation, but he is not the only one in need. There are still many people suffering (56 in Estonia) and soon enough the fund will run dry as donations tend to come only while you make a lot of noise.

So here's me making noise for Janno so he can keep making noise for everyone else and also, keep bothering the president, because from time to time they (the fat men in government) need to be reminded that their actions might have serious if not fatal consequences for someone who might be too weak to voice their concerns.

Ways to help Janno and his mission: