Hello fellow Steemians!
I turn to you with a plea for help.
I friend of mine, Janno Puusepp, needs help. He has cystic fibrosis, a genetic disease which is hindering him from living his life to the fullest. He was diagnosed as child and told he only had a few years to live, but against all odds he survived and now he's 31. The disease keeps him very weak and knocks him out for weeks at a time whenever it shows signs. Time has taken it's toll. He has lost a lot of his teeth and his lungs are about to fail.
Right now he needs support to get new lungs (lung transplants).
Who is Janno Puusepp?
Janno is a talented young man. Despite his condition he's a playwright, poet, director, comic, actor and a member of the board in Vilde Theater and Must JaAm.
He has:
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.
How Can We Help?
Ways to help Janno and his mission:
Fund donation: IBAN EE184204278605413008
Please Resteem and Upvote! If it was for me I wouldn't ask to upvote and resteem, but because it's for a good cause, to help people in need, It's worth it.
Any help is appreciated!
And to end the post on a little funnier note:
If we can raise enough money to partly pay for his lungs, he'll have STEEMlungs and then he's forced to join Steemit too :)
I'm going to try earning some credit so i can either donate or upvote more :)
every upvote helps, no matter the size :)
Aww! He sounds so talented! I'm sending a small donation your way! I hope he can get the treatment that he needs!
Thanks for the donation! Every bit helps :)
@sulev I have send a small amount of steem to your account please verify and add it towards your needs. We are all there you you. Thank you my friend @awgbibb for resteeming and putting an awareness to the community to open door of help. I am very proud to be the part of this steemit community. GOD is the Saver.
Thank you for the donation!!! Really means a lot! @bhavnapatel68
*yes, the donation is on my account! Thank you and God bless you :)
May god be with you. You will be in our prayers daily.
This post received a 28% upvote from @randowhale thanks to @ubg! For more information, click here!
Up voted! I wish him well! I wish for your post to be successful on his behalf! Let the community do it's thing!
thanks!
But I don't think it's gonna get much attention anymore.
Sorry to hear this. Maybe some whale will come along and resteem this for the cause!
Who knows.
i follow you and upvoted , i wanna read your future blogs if you have more
i wanna invite you to visit my blogs too
Thanks!
There's no need to ask others to check you blog like that. Instead, try to write thoughtful long comments. That way you'll get noticed quicker as someone worth checking out. Asking bluntly for attention usually has the opposite effect.
@sulev I wish your friend gets the intervention he needs and his health improves. Sending prayers and good vibes !
Appreciate the support :)
Up voted, resteemed and followed. Any little bit we can do to help...
Thank you @erlik
Upvoted for solidarity with him. Donated some SBD. Steemit has been good to me.
Thank you! @darthnava
Your post actually gave me the idea. Hope you're going to get well!
I am giving back help you gave me as thanks, buddy! Thanks!
upvote and resteem
Thanks @floridanow
more than welcome
Sad story, upvoted and resteemed obviously
Thank you! Really means a lot.
Sad to hear that:( It's an ugly disease. I heard about it before. Hope he will do the transplant soon and get better. Upvoted and resteemed
Thank you @alinabarbu
I Appreciate the support!
Upvoted and resteemed. Hope your friend gets the help needed!
Thanks for the support!
Upvoted, resteemed, following. I have a chronic lung disease also (not as severe as CF) so I can totally empathize. Best wishes to him
Thank you for the support! @chelsea88
Absolutely!
new to the community, but I will try my best to help! My votes aren't worth that much though... for such moments it's great to have a community like steemit! Wish the best!
Yes. Steemit can do wonders if everyone pitches in.
Thank you for the support! @redtravels
Will upvote everything you got .
God bless !!!
So sorry.
But he will live because we will generate the money for him
This awesome man needs to be on steemit! Did I understand this right? Did he already have the transplant?
no, but he has the money thanks to donations.
But there's not much left for his fund, which helps others in need.
The transplant isn't a fix either, but it should make his life easier for some time if it operation succeeds. He still needs money to buy daily medicine.
I'll do my best to get him here :)
I've upvoted you and now, I'm following you. I'll also try to support you in due course
Thanks for the support!
I hope Janno gets his lungs!
Me too. You never know when it might happen. And he's not the only one in need, sadly.
It's a tough situation.
Thanks for the support!
Wish him the best of luck and speedy recovery!
Thank you for the support! :)
Praying for your friend. Life is precious! Upvoted and resteemed!
thank you!
your very good..
Wish him well. 100% voted and prayed.
thank you!
This is a very nasty disease that kills lots of people everywhere. I upvote and Resteem.
Thank you!!
There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love