Surgery for my boyfriend Dennis Scheffel

Donations can be done via PayPal: nele.siekmann@hotmail.de
or via our german campaign: https://www.gofundme.com/f/operation-fuer-meinen-freund-dennis

 

Why does this campaign exist?


Since October 2017 my beloved boyfriend Dennis is severely sick.

In early 2018 he was diagnosed with ME/CFS. Since July 2018 he’s completely tied to his bed. Partly he was too weak to turn himself around, to chew or to swallow. He couldn’t even bear light or the slightest noises. The times were rare when he had the power to speak a few words. Most of the time he was laying for hours in his bed without a single move, wearing noise protecting headphones in his room without any light sources. Even little amount of stress that he put to his body (including brushing his teeth or just simple digestion) made his situation worse and it took days or sometimes weeks to recover.

The presence of just a single person in his room means a lot of stress for his body. That’s why I can see him occasionally for a few hours. He couldn’t see any of his friends for over a year.

Dennis wishes that someday he can play soccer again and keep up with his studies in Business Informatics. I miss to walk with him through the streets, to share my daily life with him, to travel with him, I miss all the stuff that we did bevor his sickness broke out.
 

You can find Dennis complete story here: Artikel von ze.tt 

For now the text is just available in German – for further information in English feel free to contact Maximilian: maximiliankemmler@gmail.com

On his account on Twitter @DennisME1893 he’s regularly posting about his thoughts and life.

Information about his disease: Open Medicine Foundation 

Lately there is suspicion by the doctors that Dennis is suffering of instability in his cervical spine. This suspicion gives us hope, because a certain surgery could help him. His hopes and dreams that the day he can walk again comes closer were up – Unfortunately the surgery is complicated and there are just a few medical doctors around the world that can proceed it. That’s the reason why this surgery is horribly expensive.


Why is the health insurance not paying?

First: In Germany we have a mandatory socialistic health care system which covers a lot of daily sicknesses. But a lot of less known diseases are not covered at all and the patients are relying on themselves or crowdfunding. To become part of the insurance catalogue, the disease must be well researched and there must be therapies that are approved – and due to us Germans loving rules, regulations and fixed processes – it might take years or centuries until an appropriate ME/CFS-therapy will be covered.

The certainty that this surgery can help patients with his disease is really recent and new. There are no clinical studies at all and no German experts approving it. The surgery must be done in Barcelona, in the clinic of Dr. Gilete. He’s the only medical doctor in whole Europe that can do the surgery.

To put pressure on the national health insurance we need positive examples for the cure of ME/CFS. We are desperately in hope that Dennis becomes one of them, that the thousands of affected patients in Germany will have an easier way then he had.


Since we heard the story of Jeff, who recovered through this surgery we are hoping again. You can find Jeff’s story here.

Dennis found himself in Jeffs report.

The most popular example of an ME patient is Jennifer Brea- Her ME is in remission since surgery. She’s sharing her experiences here.

There are a lot of evidences that this surgery (more exact details about the surgery you will find in the paragraph below) can eliminate the cause of Dennis disease. We know five patient that took the risk and did the surgery. Three of them are completely well again are living their lives as they did before the breakout, the other two are on their way to the state. Dennis wants to be sixth in this round.

The final diagnosis just can be done in Barcelona, because Dennis is not able to sit in an upright MRI. If the team in Barcelona diagnoses CCI, the surgery will have to be done a few days after – that’s why this donation campaign is running previously.

In case of the unlikely event that, according to the experts, a surgery won’t help Dennis we will repay the donations back to every single donor that are left after diagnosis (around 90%) through the platform.

 

Ways to donate:

https://www.gofundme.com/f/operation-fuer-meinen-freund-dennis 

Paypal: nele.siekmann@hotmail.de



The Problem that will be attacked with the surgery

CCI and AAI means that the cervical spine and atlas joint (joint connecting your skull with your cervical spine) are unstable or hyper mobile which literally causes the head sinking down  the spine causing pressure to the brainstem. Pressured brainstem can cause a list of symptoms within the Nervous- and Immune system and also Metabolism. Thus there is a good chance of significant improvement of his symptoms, once the pressure from the cervical spine to the brainstem gets removed. 

CCI and AAI are serious conditions. Untreated they can cause significant damage to the brainstem and nervous system. Severe pain, apnea and paralyzation are things that could follow. At this point in time, the only medical way to fix CCI and AAI is an occipitocervical posterior fusion stabilization surgery.

On the first MRI pictures you are already able to see first abnormalities. We will send those pictures to an expert in the United States to get an evaluation. But even a negative diagnosis doesn’t have that much of a meaning, due to the fact that most of the problems are just visible in an upright position.

41632920_1567006222399346_r.jpegsource: http://www.thepainrelieffoundation.com/craniocervical-instability/

Besides the similarities with the other patients it’s also an indicator that a manual traction (pulling of the head) makes the symptoms occur less. Because a certain level of danger concerning the manual traction we won’t make use of that until the diagnosis was done.

You can also help without money! Just share this campaign in your social media and with your friends. Every Euro, Dollar or Peso counts!

 

Thank you very much!

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Organizer 

Nele Siekmann 
Organizer
Reutlingen, Baden-Württemberg, Deutschland
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