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My name is Rochelle Ray, Director of Cryoglobulimia Vasculitis Organization Ed Moderator: and we have peter from Australia , Bernie from Washington State. Ed Moderator: You mean the cold temp of the eggs is enough to cause a problem.. Now a warmer climate also brings problems Ed Moderator: How so?

Ed Moderator: So Rochelle let's start the discussion on Cryo (if I can just call it Maybe first a definition would be good. Each Cryo patient had different areas of the body affected than others and different severities Ed Moderator: Incredible Rochelle: Not fun, it can be painful Ed Moderator: What is incidence or prevalence, Rochelle? So, anyways, besides cancer, there is also a connection with Hep C. I was dx with Graves Disease first, an autoimmune thyroid condition. Lost a ton of weight, weak and thought I was having heart issues. Ed Moderator: Are those all three connected in some way. Rochelle: I cannot pick up a cold glass of drinks without it being painful to touch. Rochelle, I actually think all three are the same disease with different symptoms Rochelle: What do you mean by being the same, Dr. I’ve never met anyone who had the number of autoimmune diseases you have Rochelle: raynauds, uctd, Sjogrens, Bell's Palsey attack, Scleroderma (Morphea type) and live do Reticularis Dr. And then I moved to rehab hospital working in the medical billing before being a mom. Eric: Rochelle, have you contacted the Vaculitis Foundation? Great lady Ed Moderator: We have people in our group with PAN who complain about sensitivity to different temps..and cold.

Rochelle: Ok, basically what Cryo means or does in our body is when our bodies are subjected to cold (Cryo meaning cold) and that temperature is usually below normal body temperature but it seems to be different for each of us our blood thickens and it causes damage to or vessels and inflammation. To make matters worse, our kidneys have to filter out a protein that is created during this process that thickens our blood and it clogs up our kidneys and does major damage. Ed Moderator: If I remember at the VF symposium in Long Beach there was just one Cryo patient Rochelle: They have many underlying causes such as cancer like Lymphoma or Multiple Myeloma, which we are finding a huge connection. Eric: I see a lot of autoimmune thyroid disease in postpartum women... Ed Moderator: Rochelle, describe how Cryo causes you such sensitivity to temps Rochelle: Well, unfortunately, I have several cold diseases so it can be difficult to tell which is which one. However, obviously Cryo is the most life threatening so I am most cautious. I have photosensitivity which doesn't help me much! movie theaters...restaurant..an office where you have no control over temps Rochelle: Yes, it is now second nature to me but it has taken several years to accustom myself to it. Plus I keep an epipen and those chemical warmers with me Dr. EVERYWHERE is air conditioned to the strato-freeze level! You are one of the "lucky" ones who show more than one. Eric: Yes, treatment is often pred or methotrexate... I can tell you Rochelle..all my years of doing this. And then I moved into the human area and worked for a dermatologist.

Eric: Pregnancy is a frequent trigger Rochelle: So I now have a long list of autoimmune diseases, darn it! It takes a Cryo patient a lot to learn how to prepare for dressing in layers Ed Moderator: Rochelle..must have really adapted your lifestyle to this particular aspect of the disease. I keep emergency stashes of socks, gloves and blankets with me everywhere I go. Rochelle: I see, so even though the same underlying cause for the process is there, those 3 conditions exist? Eric: Yes, and in some patients we see only Reynaud’s, in others Cryo. Ed Moderator: Rochelle, Eric...about the treatments... I assume typical meds often for vascultiis patients Dr. Rochelle, was the onset after your first pregnancy or the second? My list of diseases is this: Graves (remission), aortic insufficiency, migraines, IBS, dermatographism, endometriosis, intercystial cystitis, cryo, urticaria's, Ed Moderator: stunning, Rochelle! Rochelle: I, was actually a Vet Tech for many years but you'd be amazed at how that translates into the human field.

I love ice cream but damage could happen on the inside so I limit it. Peter: l am still mashing it around in my head as to just how hard life would be with Cryo Ed Moderator: And you said because of this you had to relocate to a warmer climate? Not everyone can do this but I was fortunate to be able to do so.

For some reason, I ended up with a bunch more dx after that during a 2 yr. I can't crack eggs with gloves because of the mess so my kids do it.

Rochelle: So unfortunately, I think a lot of people are going around thinking they don't have it when they do. Rochelle: We are trying to permanently transfer to Houston area. warmer than Dallas Rochelle: By far, those few hours make a huge difference!

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