When you are diagnosed with a disease it is terribly frightening. When I was diagnosed with cold agglutinin disease (CAD), I was in shock. It was too much to take in. It took time to resonate. It eventually did, after a lot of research, and I realized that I could live a long life, even with a rare disease with no known cure.
Luckily for me, my diagnosis came directly from a hematologist. I have found in the past couple of years that many patients with CAD do not get their diagnosis from a hematologist but by accident from another doctor or laboratory. They are then informed that they need to find a hematologist who can guide them and sometimes it is left up to the patient to do so.
I have also found that this is quite difficult for many diagnosed with CAD around the world. This disease should be classified as rare just because it is rare that you can find a doctor who knows what it is—and that includes hematologists who would specialize in this.
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This question comes up at least once a week in an online forum I belong to. I am newly diagnosed but I do not know where I would find a hematologist close to me. Do I see a hematologist or rheumatologist? Does anyone have a recommendation for me?
Read about the diagnosis of CAD
It is scary enough to have this diagnosis and not understand what is happening, what will happen, and what you should do. It is just as scary to not know who you should go to, sometimes delaying a treatment plan. Add to that because it is rare you don’t realize that there are communities out there with patients just like you. You are left feeling alone, scared, and stressed beyond belief.
With that said, there are places you can go to get what you need. I found a few places to look for a rare disease specialist. The Genetic and Rare Diseases (GARD) Information Center lists thousands of rare diseases you can search for and narrow down to subcategories. You can also turn to the Genetic Alliance or the National Alliances for Rare Diseases.
There are also many researchers studying rare diseases, some through the US National Institutes of Health. Often medical doctors are the ones doing the research and you may find a doctor through them. The National Library of Medicine is an excellent resource if you’re looking for clinical trials. I have not been able to find anything close to me. I have looked from time to time over the past 2 years and there is plenty going on. You can filter it to look outside of the United States as well. That seems to be where a lot of them are happening.
You can also look up MedlinePlus which was created by the National Library of Medicine to do more research on rare diseases. Further, the National Organization for Rare Disorders (NORD) is an excellent source. And then there’s the Cold Agglutinin Disease Foundation, which offers a lot of resources that will help you in your search.
Beyond all these, there are also Facebook pages with groups for you to join to get helpful patient-to-patient information.
When I was diagnosed, as I said, I was lucky in that my hematologist is in my town and has 2 other patients with CAD. That is a rarity. I have seen where many patients have to travel hours to see a doctor specializing in CAD or even one who knows enough to be helpful.
If all else fails, you can simply call a hospital. I would suggest a renowned one like the Mayo Clinic. I looked them up when I was diagnosed to get more information, and I was happy to see they were quite familiar with CAD.
The medical community has access to websites that are for them only. I would think that it should be easy for any doctor to do a simple search for any patient and supply them with this important information. It’s only for diagnostic purposes. If it does not exist, it needs to.
