We have been working on creating a user entry form. For members to add Doctors they feel are competent in treating CAD.
Then taking the data you enter, and displaying that information for other CAD’s that are seeking a CAD doctor in their own local area.
We appreciate the time some of you spent being test subjects using our entry form.
This is open to all members to input their recommendations at this time.
Please do not add Doctors you have no confidence in. Remember this may be used by other CAD’s in their search for a CAD specialist.
Link to our initial/Test Doctor list.
We hope that members grow this list to become a valid source for any country.
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We have been working on a flow chart that many were wishing they had, way back at the beginning of their CAD journey.
With lots of input we have come up with a basic flow based on current treatment plans CADs seem to encounter. This is geared mostly for a “Primary CAD” diagnosis.
We don’t expect the ending treatment plans to remain static. As research in the medical field continues, changes will always be fluid. Please update us when and if you ever run into new “approved” treatment plans.
We don’t intend to list clinical trial, or experimental treatments. Just a jump off point for that possibility.
Our thought is to also create as similar “Yes” “No” flow chart just for the diagnostic portion to confirm CAD, or Not CAD. Also all the steps to get a confirmation of “Primary” or “Secondary”. Things like all the specific blood tests, Bone Marrow Biopsies, and any type of Scans being done.
Please email us any diagnostic flow you might know. We are hoping to crowd source some rough but common flows for that as well. Like; how did you get from finding out you have abnormal Agglutinin levels? Or a low Hemoglobin level, that triggered all your testing.
Then to the Doc’s telling you that you are “Primary CAD”. Or when they tell you it is “Secondary CAD” and perhaps another branch of testing is required?
Until we know more. Please let us know if this chart seems to apply? Or send us info we can review and make adjustments. As always, Thank You in advance!
TESTING & TREATMENT FLOW CHART
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We thought we would share a new acronym (new to us). CAS (Cold Agglutinin Syndrome)
We stumbled into this reading a recent medical research article. On the subject of treatment for Cold Agglutinin Disease.
Where the Dr referred to what many of us commonly refer to as “Secondary CAD”. Using the term “CAS”. At least that is how we understood it.
We thought you might like to know this term is out their floating around.
Please click on this link to review our Glossary. If that piques your interest? We have added some new info and have tried to cross reference it. It is sometimes difficult to keep up with all that is out there.
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We are linking this Blog Post that informs our subscribed readers. This is linked to a Page dedicated to this subject. We invite any additional information.
There are two methods listed that have been used on CADs during surgery.
Much has to do with a CADs individual Cold Sensitivity level. All CADs are different. You are going to have to make your own evaluation about your own self. Then make every attempt to insure you communicate this to any surgeon you have to deal with.
Please follow to our webpage on Keeping warm during Surgery and the “Bair System” or “Bair Blanket” by 3M.
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In the past few days we have seen many questions pop up on our social media concerning this subject.
Along with those questions we see bogus, and blatant disinformation in the form of comments. All of which makes it impossible for a CAD to compile factual information to make decisions or choices. We are trying to screen our social media posts and comments we know to be un-true. Deleting them as we run into them.
We have started a Webpage with more details and hope to edit it as more verifiable facts come our way,
Follow this link to COVID.
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We have updated our glossary list, and some of the verbiage.
The latest update includes info to provide some basic differentiation between Raynaud’s Disease, and Cold Agglutinin Disease. One or the other is often confused, often assumed, and sometimes given as an incorrect diagnosis if proper diagnostic medical testing was not performed.
See Raynaud’s Disease
As always, please email us with requests to add to, or edit, our information. We also seek those willing to submit info in layman’s terms for use on this site.
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We wish to thank those sending us requests for additions. Additions to our Glossary of Terms and explanations.
We have nearly caught up with those submitted. Though some of our explanations are at a very simplistic level. We do have the basic web pages built and linked to appropriate other location.
Those that can offer better and more expanded explanations, please feel free to email us with your suggestions.
See: GLOSSARY of TERMS
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Just when you think you have read everything about this crazy Cold Agglutinin Disease. Some shred of something leads you to more interesting, or baffling, material. Of course that depends on your level of curiosity I suppose.
How many of you are taking, or are considering taking, some of the Monoclonal Antibody infusion pharmaceutical’s, know about HAMA responses, and HAMA testing?
We are trying to put together a page specific to this information. If you have any specific information or input directly related to CAD. Or even any observations that relate. Please find our email and forward what you have.
See: HAMA TEST
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This is a notification to our email subscriber list that we have added a new entity to our list of researchers.
Amanda Willis of Pinpoint Patient Recruiting has completed our info survey and has been added to our list. The link directly below is to our page that has all their info. As well as some others we list.
Medical Research Survey Contacts
If you ever need to find this list and do not have the link handy it is easy to find it off our HOME page. On the menu selections go to INFO INDEX, then MEDICAL RESEARCH. From there you can scroll down the list to see their contact info, email, telephone numbers, etc.
We encourage you to have your CAD family members, Support people, and personal advocates, subscribe to our Email Subscriber list. We occasionally post in our Blog important and informative information. Those that subscribe are automatically emailed.
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