„[…] And then, suddenly, after years of high-performance sailing without the opportunity to really rest for a moment, after years of constant alertness, the storm subsides. The sea becomes calm and peaceful, your ship suddenly glides along smoothly, without effort, without danger. There is, for the first time in your life, silence around you.“
Kathrin Bremer, CF patient
A drug with the claim and expectation of being a life changing drug
Yes, it is already noticeable, this expectant silence in the CF community. Many of us are excitedly waiting for a drug with the potential to change our lives, if CF had already changed our lives.
The tension we may feel as parents or sufferers in the process relates to questions that may be similar to the following.
- Will I be allowed to receive the drug? Short answer: From 12 years of age, if at least one allele F508del or very specific rare other mutations are present.
- Will I be able to tolerate the drug?
- Will it work well?
- Will it work in the long term?
- Will I tolerate the drug in the long term?
- Will my life change with Kaftrio?
In the meantime, there are some experience reports available, which we have compiled in the article What to do in case of Kaftrio startup problems.
We also considered at some point the question of what a drug would do to us if the CF disease had already very much determined our lives and now, more or less abruptly, the whole „other“ life would become accessible to us – because we believe that Kaftrio will do that for many of us.
What can happen when a physical and mental paradigm shift occurs?
In view of the short history of our organization, this question has given rise to by far the most elaborate article, which sometimes „got on the last nerve“ of the authors. In the article, we shed light on possible physical changes in detail and, above all, also deal with psychological processes that can occur in the course of taking Kaftrio – keyword: what does such a serious change in our physical situation actually do to us psychologically?
Now it is important to us that this article addresses the „right“ people concerned.
First of all, it should be said that the article is not easy to read in any respect. The sheer length alone requires a certain amount of concentration. But above all, the content can be exhausting and also burdensome for those who read it. At the same time, our goal is of course not that you simply feel burdened.
We would rather like you to use the time you have until the drug is available for you to think about your perhaps very different life with Kaftrio. Just see if the points mentioned could apply to you!
Look for help if you feel like it!
Talk about it with your relatives, who may also initially think: „What’s the point of this high-level whining? Can’t you just be happy that this drug is available and that our solidary community pays for it?“ Give your relatives and friends this paper if you have the feeling they don’t understand you properly!
Talk about it with the psychological workers. Give them this paper, too. The aspects mentioned may not yet have really arrived at some outpatient clinics in the focus on the question „When will the medication finally arrive?“
Not enough to throw a pill
The point is: With a pill alone it is sometimes not done, not after „such a life“. Especially when a new life „threatens“, you simply need assistance, patience and understanding of your fellows. It is your right, especially now, not to be left alone.
Please note the conversation offer at the beginning of the article. We will endeavor to provide further assistance if requested.
If you now feel ready for an actually challenging article, then click on this link. All the best for you.