GLOSSARY UPDATES

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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HAMA TEST

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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PINPOINT Patient Recruiting (Research)

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.

Subscribe to our Email List

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COLD CAD

For part of the world, summer has slipped to fall.  The frigid temperatures of winter are just around the corner.  Cold CAD conditions will be in full force.  Working against those afflicted with the disease.

At the same time, sicknesses, viruses, the flu, and other threats are on the rise.  They can work on a CADs health from yet another angle.

While CADs can sometimes coast through the warmer months of the year.  The cooler and colder months can often plummet hemoglobin levels.  Sometimes a slow slide.  But often a CAD will get a wake up slap in the face.  Resulting in a rapid decline type of episode.  Sicknesses or Cold Temperature exposures can often trigger such an episode.

While preventive pharmaceuticals may be beneficial to some.  They aren’t effective for others.  Preventative precautions may often times be just as effective.

Preventative precautions are best practiced ALL the time, and year round.  Keeping your body as healthy as possible at all times.  Waiting until you are in crisis to start paying attention, is not a healthy approach.

CADs are all different.  All react different.  Severity of the disease seems broad across the patients that deal with the challenges.

Remember,  some CADs often have no physical visible indicators.  Perhaps no visual alerts that cooler or cold temperatures are causing accelerated hemolysis and subsequent die off of red blood cells.   Or they don’t know what to look for.

Blood tests would indicate the drop in hemoglobin levels.  But by the time that might be arranged, a CAD could be well into a full blown crisis.

Other CADs do get physical visible indicators.  The darkening of their nose,  fingers or toes.  Molting or odd color variation spots on the legs or arms.  Strange sensations or crawling feeling on their scalps or other areas.  If an individual didn’t know they are CAD, they might ignore the symptoms.  Or they may not relate these symptoms to an indicator of a health issue.

The point of all of this is, many CADs need to take a preventive approach to avoid lowering Hemoglobin counts/levels.

With your weakened immune system you must avoid people that are sick.  That may mean avoiding public places as much as possible, wearing a mask, washing hands often, etc.

Having small school age children around, can often bless you with something that can really have negative repercussions.

Avoid cool temperatures, getting chilled, or cold.  Practice this 100% of the time.  Keep your environment warm at all times.  CADs often have to stay in 75-80°F temps at all times.  If you must venture out make sure you are bundled up.  Be sure normally exposed skin surfaces are covered.  For some even inhaling cold air is a problem.  Cold drinks and foods become more of a hazard to some, and even more so in the colder months of the year.

Sleeping and exposing parts of your body to cooler room temperatures for 8 hours can be a real problem for many.  Up the room temperature.  Wear a stocking cap, long arm sleeves, long leg coverings, and socks.  Even gloves if need be.  Exposing an uncovered arm or leg, or even your head for any length of time can often accelerate a CADs hemolysis.  Once your body starts destroying red blood cells faster than your body can create new replacements (Retic).  You start sliding down that slope to becoming anemic, or more anemic.

The odd thing about cool/cold temperatures.  A CADs may not feel uncomfortable or cold to remind them they are doing harm to themselves.

During these cooler/colder months of the year it is advisable that you work with your Hematologist to monitor your Hemoglobin levels on some type of reoccurring basis based on your past history.  If need be, have a RBC/CBC run monthly.  More or less depending on your severity.

RBC/CBC is the blood test for many CADs, that it is critical to keep the drawn blood sample warm.  Process it Stat to avoid failed or flawed results.  See our thoughts on keeping the RBC/CBC warm.  

But as with any statement about CAD.  All of this can all vary from individual to individual.

 

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Our Email Subscriber module is working

We see some of you found us as soon as we turned on our Email Subscriber module.  Thank You for subscribing!  Please share with your other Cold Agglutinin Disease (CAD) contacts, loved ones, or support advocates.

Clicking the blue link  below will take you to the automated sign up form

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We have outgrown our Facebook Group

We have been delaying the inevitable. Both our Facebook Page and Facebook Group have served us well for many years. But we find we need more complex functionality to present our accumulated information.

We hope to add much more information on this site in the coming future.

Please feel free to contact us about anything. We also hope to have an email subscriber list up and running soon. Watch for our announcements.

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