TTP for beginners
Every human body produces the von Willbrand factor in the blood vessels. This factor arises first as a very large particle, which is then reduced by another particle, the protease. The protease thus functions as a "scissor".
This "scissors" works only badly in TTP patients. Accordingly, the large von-Willbrandt factor is not diminished. Therefore, there are essentially two problematic reactions in the body:
1. The red blood cells crash inside the blood vessels into the large von Willebrandt factors and are destroyed.
2. In the blood vessels the large von Willebrandt factors stick together with the blood platelets and clog the blood vessels.
Both reactions lead to an under-supply of the organs.
Vaccinations
A subject frequently discussed in the context of TTP is the vaccination. TTP patients repeatedly ask whether they should be vaccinated or not.
Prof.Dr. med. I. Scharrer recommends that the following vaccinations should not be carried out for people with a history of TTP. These are live inoculations:
• Measles
• Mumps
• Rubella
• Yellow fever
• Varicellae
• Typhoral
These vaccinations should not be carried out by TTP patients.
Influenza vaccination, on the other hand, is allowed and even favorable in TTP patients. An exception is only patients with allergy to chicken egg white or other additional severe autoimmune diseases.
Kn, reviewed by Prof. Dr. med. Scharrer
Self-help group
In Germany and Switzerland, there is a TTP self-help group. The contact person for TTP patients is Prof. Dr. Scharrer (University hospital Mainz, Germany) and Ms Kn ( mail@ttp-forum.de).
Meetings of the self-help group
Since 2003, the self-help group meets once a year for personal exchange and information on new research results within the framework of the TTP. At these meetings, doctors present the latest findings from TTP research. These lectures can be found in the section "Doctors for Physicians / Lectures".
TTP-affected persons, their relatives as well as all TTP-interested from all countries are always cordially invited to these meetings!
Telephone consultation with Prof. Dr. med. I. Scharrer
Within the framework of our self-help group, Prof. Scharrer offers, Tuesday evening from 7 pm to 9 pm via her mobile phone number +491726725293, a telephone consultation for all TTP patients who would like to discuss their questions personally with a doctor.
Spokesman of the countries
In addition there is the possibility that you can send an email to a member of the self-help group in your region, to the "Spokesman of the countries". In this way, you can contact a TTP person or their relatives, exchange experiences, expand contacts, and get more information about the self-help group. For data protection reasons, only the first names of the speakers are mentioned here:
Please note: Due to the domain conversion, the email addresses have also changed. So far, not all spokesmen of the countries with their new address are online. In case of doubt please write to mail@ttpforum.de.
Internationally responsible spokesman
Kn: mail@ttpforum.de
Monika: monika@ttpforum.de
Switzerland:
Supra-regional spokesman
Taina: taina@ttpforum.de
Germany:
Spokesman of the region Nordrhein-Westfalen
Martina: martina@ttpforum.de
Angelika: angelika@ttpforum.de
Spokesman of the region Niedersachsen and Bremen
Bea: bea@ttpforum.de
Spokesman of the region Berlin, Brandenburg and Mecklenburg-Vorpommern
Karina: karina@ttpforum.de
Spokesman of the region Sachsen, Sachsen-Anhalt and Thüringen
Katja:katja@ttpforum.de
Spokesman of the region Baden-Württemberg
Oliver: oliver@ttpforum.de
Spokesman of the region Rheinland-Pfalz and Saarland
Beatrix: beatrix@ttpforum.de
Spokesman of the region Hamburg
Christina: christina@ttpforum.de
Spokesman of the region Hessen
Patrizia: patrizia@ttpforum.de
Sigi: sigi@ttpforum.de