Thanks for visiting our About Us page. We are Rick and Marilyn. Husband and wife.
Marilyn has been dealing with Cold Agglutinin Disease since at least the year 2000. But suspect it was years prior to when actually diagnosed.
Back in 2000 there was little to no available CAD information we could find. Multiple medical professionals provided no explanations. As if this was a secret or they didn’t understand it either.
Rick has been on the sidelines as an advocate offering support. We both hope to help other CAD Patients or Family Members. Those on a similar quest for knowledge or answers.
We would like to thank and show our grateful appreciation to all the un-named individuals that have contributed, and continue to contribute information. Information that we use on this site in an effort to benefit all. We couldn’t do this without you.
With little to no information back in our beginning. We set out trying to accumulate and document as much as we could. Then tweak and update the information the best we can.
We try to keep this site in a rather simplistic generic visual layout. Without constant changes to format.
We keep our site void of annoying click bait type ads, that are populate within website text and paragraphs. Sure it would make us money like many are doing.
We want users to be able to easily find information. Don’t expect a bunch of images or things of that nature. While we do run some limited ads in hopes of generating some revenue to cover expenses. Those ads are off to the side, or at the bottom of our pages.
More About Us.
Marilyn is a confirmed CAD. “Primary CAD” in her case. Dealing with the disease since around the year 2000. Both Rick and Marilyn have in-depth knowledge of CAD blood testing, and some of the issues CADs have to deal with concerning getting accurate results. Especially in cases that CAD sensitivity is real high requiring special blood testing protocols. Marilyn has a Technical background, and is adept at research.
Rick has a Technical and Engineering background and self taught enough to create and maintain this website.
What appeared initially for Marilyn, was simply an abnormal result on a blood test. An indicator that remained static and had little implication for many years. It initially had zero impact on her lifestyle.
From the year 2000 things started changing for the worst. Marilyn has dealt with two ICU stays of about 10 days each, 5 years apart. In both ICU stays she has had to bridge serious episodes of anemia, by surviving off plasma infusions. In both of those cases, her body’s “Retic Function” Completely shut down.
Marilyn has had several surgeries since having CAD. That always requires special arrangements.
In December of 2020 Marilyn was informed she has Breast Cancer. An aggressive HER2 type. Unrelated to her CAD, or though that is the current thought. She did have Rituxan, as well as other pharmaceutical treatments for CAD in the past. We doubt we will ever know if anything CAD treatment wise, is related to her cancer?
She did have every known (at the time 2020) DNA testing done for cancer markers. Nothing came up as a hereditary marker that may have triggered her breast cancer.
January of 2021 Marilyn went through a complete double mastectomy (Bi-Lateral),
February 2021 she started down a long road of Estrogen suppression & Chemo-Therapy for cancer.
May 2021 Marilyn competed her 12 weekly Estrogen suppression & chemo infusions.
June 2021 Marilyn starts down a 9 month series of every 3 weeks of immuno-therapy, as well as long term Estrogen suppression.
Our Thoughts on CAD
SEE MARILYN’S Personal story dealing with CAD
The information on this site is about support or general information. At no time take anything on this site as medical advice. This accumulated information is more about our journey with CAD. Also lots of input from others with CAD. An attempt to communicate information in laymen’s terms. It is a “big picture” of what a CAD may, or may not, experience.
We may reference other outside sources. That info may or may not be factual or even relevant to what you are experiencing. It is your own responsibility to do your own in depth research based on you and what your medical professional is telling you.
We are not about providing specific medical recommendations. Not on our website or Facebook social media. None of us are Medical Professionals.
Be very cautious when using any social media to obtain your information. Whether you are using our own Facebook Group, or other Facebook groups associated with valid and even professional appearing sources of information.
Often there are over zealous or opinionated Facebook Group members that will either contradict valid information, or post information or dispute information they may have never personally been exposed to, or attempt to push a one sided point of view at the expense of others. Some groups take no action to weed out such members.
Our group receives complaints from some of our own Facebook members about such members. Some knowledgeable and helpful members get to the point they are even afraid to speak up, or post valid info, due to some of these contradictory or confrontational types. Some members even indicate they came to our social media group to avoid this very conflict in other groups.
All of this is unfortunate for those seeking opinions and information that allows someone to form their own opinions. Just know it exists.
Just like any social media source there are those that seem bent on just creating conflict. Or perhaps they simply do not recognize what they are doing to the group? This occasionally leads to deleting comments and/or banning members. We do attempt to weed these members out. Often based on IM complaints, or “flagged to admins”, by other members.
So remember. Social media is a bunch of opinions. Some factual, some not. You have to approach the information as food for thought. Then research on your own.
Bear in mind, most CAD’s that have been seen and treated by multiple Medical Professionals, are often told conflicting information even by those very doctors.
So no lay person can certainly provide you a course of action. Especially via social media based on their own experience, what they have read, or what they have been personally told.
Your individualized personal health conditions are also a very large factor in this disease. In your testing, treatments, and how you have to deal with things that may impact your health.
Our recommendation is to always seek professional medical advice for anything you question. The sooner the better. From multiple professional sources, so you have a variety of professional opinions to base important decisions on.
Team up with a Hematologist from the moment you suspect or are advised you may be affected by Cold Agglutinin Disease. One versed in CAD is even better.
Then make the best decisions you can, based on what information you have gathered and confirmed via medical professionals.
Consider getting tested for some other related diseases associated with CAD such as Lymphoma. Rule out what you can.
At a minimum collect baseline test results from the moment you know you are CAD positive. From that point on, keep your own paper copies of testing results, different symptoms, changes you identify, copies of medications prescribed and taken, side affects, and anything your doctor(s) recommends or tells you that is significant in any way. Keep these items organized in chronological order.
At the same time educate yourself the best you can. Try to understand the basics of tests being run, and why. Know there are varying degrees of this disease. Though some CADs tend to ignore this, if they are personally stagnated where they are. Just know you may be affected differently than anyone providing their opinion. As more CADs share their personal information you will find just how apparent, everyones experiences differ.
There are varying degrees in doctor knowledge of CAD. As well as medical professional support people.
All of which, in turn may impact your medical health or lifestyle in different degrees. Don’t wait until you are flat on your back in the Emergency Room trying to dig up facts. Don’t be intimidated into not switching doctors if you are being treated by someone that has limited to no knowledge of CAD. You seem to be getting worse. Or you feel you just can’t communicate your concerns to your medical professional.
652,812 total views, 1 views today