Disease Insights: Cryoglobulinemia

Disease Insights: Cryoglobulinemia

In this video, Dr. Divi Cornec, and Dr. Alvise Berti give an overview of Cryoglobulinemia (Cryo), one of the most rare of forms of vasculitis. They are joined by Steph Lee, a patient with Cryo who shares her story about the challenges of getting a diagnosis.

Welcome and Introductions 0:06
Overview of Cryo with Dr. Divi Cornec 3:46
What is cryoglobulin? 5:22
How do we detect cryoglobuli? 6:05
Are there different types of cryoglobulins? 7:10
What are the causes of cryoglobulinemia? 7:37
How frequent is cryoglobuliner? 8:31
Clinical manifestations of cryoglobulinemia: Two distinct entities. 9:44
How do we diagnose cryo? 13:45
Prognosis of CryoVas. 15:36
Theraputic strategies in CryoVas 18:27
Conclusions. 20:46
Steph’s Story about living with Cryo. 21:26
Discussion about Steph’s story with Dr. Cornec and Dr. Berti. 31:01
Q: Does testing for cryo always involve imaging, or is there a blood test involved for diagnosis? 35:20
Q: How long does it usually take cryo to go into remission with the use of Rituximab? 36:24
Q: Does essential cryo present any differently than other types of vasculitis in the lungs? 39:06
Q: Are you aware of any research studying essential cryo? 40:29

VF Disease Insights: Steph’s story about living with Cryo

Introducing Steph Lee 0:02
How it started. Early symptoms. 1:45
Extreme fatigue that wasn’t normal. 2:48
Failed a test at the hospital. 4:00
Sensory, neurological symptoms grew worse. 5:15
I was told to see a psychologist. 5:37
Prednisone: Back to myself in three days. 6:23
Started taking Rituximab. 8:05
We’ve been looking for horses. Now it’s time to look for zebras.” 10:09
Neurologist: “There’s one type of vasculitis they didn’t check you for….” 12:21
Coping strategies with Cryo. 13:55
Adjusting my mental attitude. 14:28
Coping with the cold. Staying warm with cryo. 16:29
Why it’s a big decision where patients with Cryo choose to live. 17:57
Always need extra clothing to stay warm. 20:24
Surviving winters in Minnesota with heated clothing. 22:13

Steph Lee talks about her seven-year odyssey of trying to get a diagnosis for her unexplainable symptoms, and how her life has changed after being diagnosed with vasculitis. It’s a fascinating interview as Steph details the ways she has adapted her life to meet the challenges of cryo.