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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 do recall that it has been shown that postpartum can be possible trigger Dr. Eric: I think they are different manifestations of the same underlying autoimmune process. The labs have been uncooperative in my area to do a correct testing since they changed their procedures. Eric: Rochelle, have you ever had Hepatitis C or B? My mother has Multiple Myeloma so I am being watched for it and I see a hematologist/oncologist. I see my heart doctor every 6 months Ed Moderator: You said an extreme cold can cause a stroke..happens because..how the vessels are reacting? The feedback I get is so amazing that there is such a need for scared people out there Ed Moderator: What type of work did you do in medical field?
Ed Moderator: There will be pan patients who read this and say they have reaction to cold. Eric: Yes, it's a blood test, and can be done along with all the other tests without any trouble. I have travelled all over the US and that seems to be where I think I can live both $ and temp. Ed Moderator: Well, Rochelle this has been a hugely informative chat.
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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DATE: March 24, 2011 Participants: Ed Becker: PAN Support Director / Moderator Rochelle Ray: Director of Cryoglobulimia Vasculitis Organization Bernie: PAN Group Member Peter: PAN Group Member Dr. Start off with some backstory and tell us about yourself, where you live, family.
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.