Uutta tietoa/ New info
Pää räjähtää pian kaikesta uudesta tiedosta minkä olen kaivanut esille ja saanut eri alojen ammattilaisilta. Mitä ihmiset tekivät ennen sosiaalista mediaa? Päivitän heti kun ehdin ja ymmärrän puoliakaan mitä minulle on kerrottu!
Alla olevan artikkelin lihavoidut osat allekirjoitan maalaisjärjelläni ihan täysin! Siksi olen pitänyt sairaalakäynnit ihan minimissä. Olen kaksi kertaa perunut sairaalareissun, ja juuri siksi, että haluan välttää ylimääräistä stressiä. Stressi pahentaa sairauksia.
Kerran ei menty sairaalaan eikä testeihin ollenkaan, koska tyttö voi silminnähden hyvin ja oli vielä korkealla steroidimäärällä, joten en nähnyt mitään syytä mennä. Toisen kerran sain puhuttua, että käydään vain "pyöräretkellä" ottamassa lähilabrassa pikatesti verestä. Onneksi lääkärit ovat olleet joustavia tämän suhteen ja lähilabra onkin meidän uusi suosikki. Siellä pääsevät lapset heti jonon ohi ja ulos, nopea juttu! Sairaalareissuun menee koko päivä ja pahinta on edellinen ilta itkua seuraavasta päivästä.
Meillä taudista ei puhuta, pissatestit tehdään ilman sen kummempaa showta, tyttö ottaa itse pillerit dosetista ja hei, stressivapaata, normaalia elämää matkalla remissioon!
My head is bursting with all the new information I have gathered. Will write it down here as soon as I can get my head around it all.
The article underneath and the parts I´ve highlighted I totally, with all my heart believe in. This is why I have kept the hospital visits to a minimum. I have cancelled two hospital appointments already, one because I saw no reason to go, since I knew she was just fine, still on large doses of Pred. The other I played down to a "fun morning bike ride" to the nearest lab for a quick blood test before school. Thankfully the doctor´s agreed to the lab visit being good enough. The lab is great, kids get to cut the line and go straight in and out, over and done with quickly! The hospital visit takes all day and the worst part is the crying over it the day before.
I believe stress makes it worse, it makes everything worse. That is why we don´t talk about the disease, we make no fuss with the pee test in the morning, she takes her own pills from the dispenser and hey, we are all stress free and on our way to remission!
Future strategy of research in idiopathic nephrotic syndrome by Dr. J.C. Davin
To set up optimal treatments for INS a comparison of different drugs or drugs combinations for different grade of severity of the disease is necessary. Considering the recommendations of the 2012 guidelines for clinical trials for INS, several thousands of patients should be necessary to reach this aim. Because INS is an orphan disease, this can only be achieved by international multicenter studies. A large European network is necessary to accelerate this process. The latter will include clinicians, scientists, psychologists, trialists and representatives of patients organization and of financial institutions.
Pragmatic trials should be promoted. The great majority of trials performed actually are randomized controlled clinical trials (RCTs). The design of those trials implies restrictive conditions of treatment that do not reflect the conditions met in the real world (randomization, placebo controlled, limited inclusion criteria). In pragmatic studies, on the contrary, patients have the choice between 2 treatments, there is no placebo, no randomization and the effect of the relation doctor-patient is entirely preserved.
Registries should play an important role in this strategy. They will imply a core of data registration common for all studies on which specific modules according to studies specificities can be adapted.
After completion of studies , general clinical data (demographic, biopsies, response to treatment…) should be used for epidemiological purpose.
Clinical trials may facilitate pathophysiological studies for different reasons. Clinical trials protocols of blood sampling may provide samples for other purpose without additional puncture. Furthermore, the latter provide a unique opportunity to study the mechanism of action of drugs which might clarify some pathophysiological issues.
As an increasing number of data suggest the role of psychological stress in immunological disease exacerbation (asthma, psoriasis, rheumatoid arthritis…) the latter possibility should be studied prospectively for INS relapses.
It is actually well accepted that INS results from lymphocytes dysfunction that manifest under triggering circumstances (infectious episodes,…). A Japanese team has recently shown in a retrospective study that relapses not related with infections are mainly clustered in the 4 days preceding a planned visit at the hospital. This lead those authors to conclude that the stress of this visit might have triggered relapses.
In lymphoid organs, lymphocytes are in close contact with the vegetative nervous system and are provided with receptors for catecholamines and acetylcholine. It has been shown that after a standardized experimental psychological stress, a parallel increase of adrenalin and cortisol levels was observed in blood and saliva of the subjects. More interestingly, one can observe a parallel stimulation of the NFkB lymphocyte transcription system which is also stimulated during INS relapses.
In case the role psychological stress is shown to play a role in INS relapses, different method allowing to improve stress coping should be used preventively. Interestingly, it has been shown recently that meditation is able to inhibit the NFkB system in humans.