Welcome to our website for Cold Agglutinin Disease patients and their families! Created in February 2007, by 3 CAD patients who met through NORD ( National Organization for Rare Disorders), it is our goal to offer information, support and encouragement to the CADdy Community.
I wanted to let you know about a CAD patient registry called the COMPASS Registry. It is nationwide in scope, across all 50 states in the U.S.
This registry will enable researchers to create a deeper understanding of the biology of CAD and the consequences for patients of living with the disease. There are several benefits of joining the registry: • Integrate your CAD-related health records all in one place, at no cost to you
• Take a short health-related survey: think about your disease in a new way and compare your answers to others in the registry
• Have a blood test at the Quest Patient Services Center nearest you, and support the development of new diagnostic tests and new medicines using what is learned.
• This will be at no cost to you, and you will receive a $50 gift card to compensate you for your travel and time each time you give a blood sample.
Your information will be stored in a secure database, built and maintained by PatientCrossroads, a medical information technology company that has created and maintained similar patient registries for over 250 diseases.
You can click on the link here to register: http://www.compassregistry.org I hope you will decide to participate in this exciting opportunity.
Betty Usdan (Nov, 2016)
The information and views expressed on this site are those of three non-medical people, all of whom have Cold Agglutinin Disease (CAD), a type of Autoimmune Hemolytic Anemia. At times we have used medical terminology. We have tried to be as accurate as we can in presenting this information.
Always check with your doctor before making any medical decisions since he/she best knows your case.
Due to the deep sense of isolation each of us experienced upon diagnosis, we felt that a site would be helpful where Cold Agglutinin Disease sufferers (we are going to call ourselves ‘CADdys’) could obtain information, and “talk” to each other. It certainly would have been beneficial to us, especially during the early years while we adjusted our lives to the new “Rules” we now live by.
Cold Agglutinin Disease CAD is also known by a number of other names:
- Autoimmune Hemolytic Anemia (Anaemia)
- Cold Agglutinin Autoimmune Hemolytic Anemia (Anaemia) (CAIHA)
- Cold Haemagglutinin Disease (CHD)
- Coombs Positive Hemolytic Anemia (Anaemia)
- Primary Chronic Cold Agglutinin Disease
Other references include:
- Cold-Antibody Disease
- Idiopathic Autoimmmune Hemolytic Anemia (Anaemia)
- Immune-mediatd Hemolytic Anemia (Anaemia) (IMHA)
You can use the various search engines such as Google.com, Yahoo.com, and Ask.com to access these names and find a wealth of information.
The statistics on the prevalence of Cold Agglutinin Disease are not precise, however, it is believed that it affects about 1 in 60,000 people, according to the Norway study of 86 CAD patients.
Actually you are a millionaire! The rate of incidence is about 1 in one-million per year. So in a country of 8 million, you can expect to get 8 new cases of CAD each year…….look for them when you next visit your Doctor……
We offer some suggestions on how you can help yourself in everyday situations, give you more details about Cold Agglutinin Disease, provide a list of other CADdys, show some of our “stories”, and give you news about changes occurring in the treatment of CAD. Also, take a look at our Links page for additional sites which you may find of interest.
CADdy CHATTER Group on Facebook.com is exclusively our group where you can directly interact with 600+ other CADdys from around the world. Please join us there at no cost. https://www.facebook.com/groups/192296905079/
And please use the Contact Us page. We would really like to hear from you!