EPIC Sisters

Two sisters, two causes, one sad fate
INVISIBLE ILL: CROWD-FUNDING FOR A TREATMENT IN AMERICA

We are two sisters and because of fate, our lives have been upside down by the same condition for over 3 years. This makes every day feel like a struggle for us. Recently a treatment method crossed our path that could change our lives forever! Unfortunately our health insurance does not cover this treatment. Therefore we need to raise € 16.000,- ourselves and we could really use your help! Will you be our life saver?

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Epic Sisters

€14.003 of €16.000 raised
 
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Donation Total: €5,00

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Let's go back in time ...

We are two sisters who, by fate, became more similar than we wanted.

We grew up in a family with four children. Agnes is the second child and Paula the fourth.

We have always been blessed with good health that has brought us great happiness in our lives. Together we have experienced the best adventures.

As a family we have experienced the best adventures; we loved to go to the Czech Republic, Croatia and Slovakia for the summer holidays.

And later on in life we loved making road trips together, with family from Canada for example. Just with four girls in the car to Berlin, Prague, London, you name it, we did it!

Not only did we share a passion for traveling, we also shared the same interests in sports like running and Krav Maga. We loved beating each-other up while working out ;-).

Have we always been aware of our health? Probably not.

Our lives now look quite different than before…

Then this happened …

April 2015, Agnes (now 35) underwent a minor gynecological intervention, after which a bleeding followed. This bleeding, which later proved to be an arterial hemorrhage, was initially disregarded by the emergency room GP without any checks. He claimed: ‘You’re not going to die from a little blood loss, girl. ‘ The gynecologist on duty also underestimated the bleeding the next morning.

The excessive bleeding putted Agnes in a hypovolemic shock. Fortunately Agnes was already close to the OR so help was nearby. Agnes has lost half of her blood. The quite innocent intervention that she started the day before, ended up with huge consequences for her health.

The hypovolemic shock probably caused brain damage which has now led to a chronic form of Vestibular Migraine , Visual dizziness , Mal de Debarquement syndrome. The symptoms associated with this are very debilitating:dizziness, concentration problems, nausea, sound and light hypersensitivity, visual impairment, (pulsatile) tinnitus and abnormal fatigue.

In short, Agnes went from core healthy, socially very active, hard working, to someone who is struggling daily to get through the day. Click here if you want to read the whole story.

And then there’s Paula (now 31), the younger sister of Agnes, who gave birth to her second child in August 2015. Paula was a very fit and healthy mother before childbirth, she loved to exercise and there was not a cloud in the sky. Quite quickly after giving birth, Paula suffered from the same physical symptoms as Agnes (dizziness, concentration problems, nausea, sound and light hyper sensitivity, visual disorder, tinnitus and abnormal fatigue).

What was initially disregarded as a persistent virus on her equilibrium organ was later also found to be a debilitating and chronic form of Vestibular Migraineand visual dizziness.

A bizarre situation where two sisters are experiencing the same nasty physical effects caused by two different events.

Since then also Paula’s life has been, often literally, turned upside down. Her life now consist of survival on the one hand and trying to raise her two little sweet children on the other hand. Nothing goes automatically, everything takes a lot of energy and effort. Every activity she takes is weighing: Is this worth it? She has to weigh every activity she would like to do: “Is this worth it? If I do this now, what else should I drop?” Sometimes she deliberately crosses boundaries (because of FOMO), which often results in not being able to get off the couch for weeks and reaching the couch at all is already an achievement. Click here if you want to read the whole story.

Are our symptoms visible? No usually not, we are stars in ‘pretending‘. Also (emergency) medication sometimes keeps us going for a few hours. What the outside world does not see is that we have to lay in bed days before and after we do something.

We have both been actively looking for a suitable solution with doctors (in the Netherlands and abroad), therapists, in food, activities, in treatment methods …. But NOTHING seems to work Of course we are grateful for what we do have; we both try to live our lives in a way that is doable and we are learning step by step to accept that we have become a shadow of who we were before.

But then, out of nowhere, CognitiveFX crossed out path; a private clinic in America that is specialized in treating Post Concussion syndrome. This clinic treats people who still have very disabling complaints after a concussion. Are you interested in finding out how we have found Cognitive FX? Click here.


The treatment program Enhanced Performance in Cognition (the EPIC, see what we did there?) is a week long program-me, at the beginning and at the end of the treatment week they do a Functional MRI (fMRI). This allows them to map the blood flow precisely and thus find the affected brain areas.

The major difference with rehabilitation centers in the Netherlands is (in addition to the use of the fNCI) that they perform a large part of the therapy sessions at the same time. A little theoretical: this way the neurovascular coupling is restored. That is the basis of a healthy brain. If all the brain areas get the normal bloodflow back again, then Neuro plasticity will occur. Thus, effective roads are created again and the autonomic nervous system is regained.

So e.g. you’re standing on a balance board, with glasses that alternate one of your eyes, you throw a ball to the therapist back and forth and in the meantime you have to put a sentence in alphabetical order (oh and someone will walk around with a ratchet). Sounds nice, eh? It seems that if you do this 3.5 a day in a row (where the exact activities need to be fully attuned to the results of your own fMRI, interspersed with rest and other types of therapies), your brain will retrace these new routes as well as known routes (neuro plasticity).

This means that the symptoms decrease considerably in the majority of patients. The results are truly amazing! Read Dutch examples here, here and the English ones through Google Maps here!

But wait… What?? We didn’t have a concussions right? o, we didn’t but all of our symptoms and treatment recommendations, also fit with the Post Concussion Syndrome. After an extensive online session with Dr. Paney in Utah we have both been found suitable for this treatment and they have good hope that they can help us. Read here how the intake went.

We can start the treatment on November 4th, 2019!!

Do you want to help us?

After 3 years of struggling we finally have found hope again!! Hope for Paula to be the involved mom she would love to be again. Hope for Agnes that her living space will get bigger than just her bedroom and living room.

However, this treatment is not reimbursed by our insurer, big bummer! That’s why we want to ask you for help! Our goal? We would like to raise the target amount of +/- $ 18.000,- so we are able to afford the EPIC treatment in Utah and the possible necessary booster days for 2 persons.

We do not have a 100% guarantee for a 100% cure, but this is 100% for sure our only chance to add more quality of life.

The earnings of the advertisements you encounter on the site will also benefit this crowd-fundig.

If you have any questions, please click here or don’t hesitate send us an email info@epicsisters.nl

We would be eternally grateful if you could help!! If you would like to make a donation, please click on the button below…

'And when we crash, we disappear, so you never see us at our worst' - Jennifer Brea

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