Cryoglobulinemia Community

Meet, discuss & support other patients or families living with Cryoglobulinemia. Contribute to topics, or just share what's on your mind

Hello

I am looking for information on cryoglobulin

Here I am apparently positive in my blood tests to cryoglobulin and pause me a lot of questions and especially what to expect

SandraRC
moderator

Hi MaloGigi,

Welcome to the community. My name is Sandra and I work with EURORDIS as community manager on RareConnect .We’ve moved your post from Understand section to the Meet section of community.

Before moderators and other members in the community join this conversation giving you more detailed information, in this section you can check all other conversations between members related to Cryoglobulinemia and participate as well.

Also check the other sections of this community to read stories of the families and find interesting articles and information about Cryoglobulinemia. In Member section you can also find a map with the location of other members.

marianne
moderator

Hi MaloGigi and welcome to our cryo support group. Can you tell us what symptoms led you to get tested for Cryo? How are you feeling? Are you on treatments of any kind? Do you have a doctor who knows about Cryo or vasculitis? Cryo is a type of vasculitis. It's important that you start to educate yourself by reading our website. Our site can be translated if you look for the orange tab at the bottom of the front page titled, TRANSLATE.

It's important that you start to watch your reactions to changes in temperature. Please DO NOT let your body feel cold at any time and if you are outside it's important that you protect your lungs by covering your nose and mouth.

As patients, we advocate to "Stay Warm" at all times knowing from our experiences that the temperature can affect how we feel. Please know that staying warm does not mean just putting on your coat and hat. It's your job to understand at what temperature the air is affecting how you feel. I start with a pain in my head and then a headache along with getting brain fog. It's usually my first indicator that it's too cold. On some days the temperature can be as high as 60 degrees and a flare will start.

Sometimes our docs will treat the underlying disease. Do you have one that you are aware of?

Did you know that about 90% of cryo patients also have Hep-C. In some cases when the Hep-C is treated the cryo will settle.

Cryo can cause a plethora of symptoms that are all discussed on our website. Don't get discouraged because there are treatments that you can get started on.

Do you have any specific questions?
http://allianceforcryo.org/