Living with Cryoglobulinemia, a rare disease can be quite challenging but don’t lose hope. We have gathered information and tips from patients and doctors and share them here to help you cope better with those challenges. Use the links below to navigate to the resources associated with your specific needs.
If you have been diagnosed with cryoglobulinemia, chances are you have experienced one or more of the following symptoms:
Various kinds of rashes on your legs, arms, or all over your body; muscle and joint ache; swollen joints and tissue; numbness and/or tingling in your fingers, toes, hands, and feet, especially when exposed to cold; extreme reaction to cold exposure (air or water temperature, wind, air conditioning, food or drinks, ice packs, etc.), chronic sinus irritation; extreme tiredness; being out of breath; eye irritation; stomach pain. If your cryo effects major organs, the symptoms can be even more severe and include water retention, protein, and blood in urine, high blood pressure, loss of sensation in hands and feet, tissue discoloration, and so on, depending upon the organ involved. In all of the above cases, first and foremost, follow your doctor’s advice!
For many of us, doctors suspect cryoglobulinemia but the test comes back negative. Unfortunately, that’s not always the good news we hoped it was. It might be that the test was not done correctly. Cryoglobulinemia Testing
Many of us suspect that we might have cryoglobulinemia but have never been diagnosed with it. Even if at one point we were diagnosed with it, we might find it hard to get adequate care from our general practitioner or even from our specialists. It is because cryoglobulinemia is such a rare disease that not many doctors are familiar with it, especially not in the sense of actually having treated other patients with the same condition. Here is a clickable map of doctors (each submitted by a member of the Alliance for Cryoglobulinemia) from all over the world who are knowledgeable about cryoglobulinemia. Hopefully, this will make it easier to find someone in your area if you are looking for a doctor. If you know of a doctor familiar with cryo but is not on the list, please email us with the information. Doctors who treat Cryoglobulinemia.
As people living with cryo, we believe in the importance of “staying warm.” What exactly does “staying warm” really mean? For many of us, it means that temperatures in the 60s will cause us to flare. It does NOT mean that you should just wear a coat and hat in cold weather. As you read through our website you will read stories of patients living with cryo sharing what they know about temperature intolerance. Use the following links for tips on how to deal with cold and for cold weather gear: Tips to Stay Warm, Warm Gear Tips
The major motto of our group is “You are rare but you are not alone.” To connect with you cryo peers join us here: Support Group
There are a number of successful approaches to managing cryo but as of now, there’s no definitive cure yet. We all hope that someday soon a cure will be discovered and that until then, many doctors keep on working on finding it. If you are interested to see recent and ongoing research projects, you can find them here: Research Tools
We shouldn’t underestimate the role of our partners, family, and friends in our wellbeing. Caregiving is not an easy task and can take its toll on the most dedicated person both physically and emotionally. But they are not alone either. Click here for our collection of resources for caregivers: Caregiver Resources
The information provided here is not in lieu of medical care. Please consult your medical professional.