Botulism is a rare illness caused by the bacterium Clostridium botulinum.
One 'comfort food' for me, that is very difficult to find in Japan, is pickled paprika (red or yellow peppers). Even fresh peppers are usually imported and exorbitantly priced -- small and often blemished, at about $2 apiece. When you find 'perfect' fruits at a fraction of the price, it's hard to resist buying them in bulk. Back in 2004, I bought new glass jars (900ml) (ie, almost 1 qt) with regular steel screw-on lids with integral seals, in anticipation of finding just such a bargain. I already had a recipe and method (from the internet) and suitable vinegar. In April 2004 I found my bargain sale, followed that recipe and made several jars of the most delicious pickles, which we finished in early-mid 2008. (I do understand that this is 'pushing one's luck' a little bit! One, maybe 2 years is recommended as a maximum, but I'm still here and my wife misses the home-made pickles as much as I do.) This June, the bargain wasn't as good, but the peppers were larger, half-price and in excellent condition. I repeated the recipe, but now I'm a little worried! (The web-site with the original recipe disappeared some time ago...scared-off by 3-4 American Universities?) The original recipe had the usual warnings about food poisoning, but involved VERY LITTLE 'processing time'. Washed and filleted raw product was stuffed tightly into hot, sterilized jars with a clove of peeled garlic and the boiling pickle brine (mostly vinegar, 4.25% acetic acid after dilution, pH< 2.9x) poured over the peppers. It was recommended that the *unsealed* jars be placed into boiling water for about 5-10min to raise the temp enough to make the sterilized jar lids seal. This was done and the pickles were excellent, just like the ones my grandma and my uncle used to make, using the identical Hungarian(?) method. This year, I did 3 quarts using this method, but am considering disposing of them (well- away from human or animal reach) just in case. I am going to check the pH of one of the jars in the next couple of weeks, before disposal, though. From a month of research I believe that, as far as botulism goes, if the pH is much below 4.6, the pickles should be safe to eat, if kept refrigerated. I'm expecting to see a pH of (at most) 3.x. If it's higher than 3.9, I will burn the product to ash and smash the jars and lids. My only real worry is that water, from the peppers themselves, may dilute the acetic acid of the pickle brine, over time, allowing Clostridium botulinum to grow. A week or two later, I did another 4 jars using a boiling water bath, with boiling water covering the [stainless steel] jar lids by 2" or more for 20 minutes. I'm going to take my chances with these, even though I know the temps were not high enough to destroy C. botulinum or its spores. [Pressure canners are not available in Japan, AFAIK, and no-one who sells them in the USA wants to ship them here.] Food Safety, Medical and Microbiology professionals, if you're out there, please advise on my chances of survival. I know how bad C. botulinum toxin can be. Sufferers and survivors of botulism, can you help with details of the sources of your poisoning? Thanks for reading and best wishes, copyu PS: I have a microscope that probably rivals those in the average suburban Doctor's surgery, but cannot find any protocols to test for suspected C.botulinum that are suitable for a home lab. Help, anyone?
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.