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Trish Donahue will share her journey of being diagnosed with cryoglobulinemia. "Out of the blue I woke up with legs that were killing me. Diagnosed with cryo 11/12, I'm 70, a retired marathon runner and triathlete, active all my life in sports, was a journalist and writer, now I sell cruises and love to travel but don't know what the future holds with this disease, which they fortunately diagnosed pretty fast. I'm a breast cancer survivor and have MGUS...now peripheral neuropathy too, new with the cryo which is so scary. Have had 2 rituxan infusions and am on high dose of prednisone which has me bloated up so I don't even look like myself. Love to read, decorate, have 2 darling pugs and my neat husband Mike. We live in CA. Always been a positive person so this incurable "thing" is not what I want. Thank goodness for Diane!!" http://www.cryoglobulinemiavasculitis.org/
Did you know May is Central Nervous System Vasculitis month?
National Seizure Disorders Foundation has chosen to honor Central Nervous System Vasculitis Awareness Month upon discovering how rare this disease is and how prevelant seizures are among it's survivors. 30% of people living with central nervous system vasculitis live with seizure disorder. This caught the attention of NSDF staff and during this show we bring you quality information to increase your awareness of CNSV. During this episode, National Seizure Disorders Foundation invites survivor and advocate Chelsey Lawrence to discuss her knowledge and experience of CNSV and seizures with you in order to increase your awareness. Brew something delicious to drink, settle into your favorite chair, and join NSDF Presents as our guest shares perspective on surviving, caregiving, and advocacy of Central Nervous System Vasculitis (CNSV)and seizures. We welcome comments and questions. So please feel free to "follow" NSDF Presents here on BlogTalk Radio, comment in the appropriate area & connect with National Seizure Disorders Foundation on FaceBook and NSDF website
Joyce will be talking about: The 2013 Vasculitis Symposium, July 12-14, 2013, in Philadelphia, Pennsylvania and what is the latest greatest with VF with a special message for all who live with and overcome cryoglobulinemia vasculitis!
Show is 9 a.m. PT, 10a.m. MST, 11 a.m. Central time, and 12 noon Eastern time. Diane Dike, Ph.D. SCwSG/CVO
Host Dr. Diane Dike was thankful to find Dr. Lee Altenberg through his website about 10 years ago. They enjoyed a phone call where Diane expressed her appreciation for his website full of helpful information. Over the years it has served as a guide and Diane has posted his informative information on the CVO website and in numereous Facebook posts. It is with great joy that she welcomes him to the show today! Dr. Altenberg is a mathematical population biologist researching the theory of evolution. He was born and raised in California, receiving his A.B. in Genetics from UC Berkeley, and his Ph.D. in Biological Sciences from Stanford University. He was at Duke University teaching evolutionary computation when his dad moved in with him and was hospitalized with heart failure. To give his father the best quality of life with his decades-old cryoglobulinemia condition, they moved to Maui in 1994 where he lived another 11 years, during which time Dr. Altenberg served as Associate Professor in Information and Computer Sciences at the University of Hawaii. Dr. Altenberg is Associate Editor of the Journal BioSystems.
Liz is the amazing, Director at CoRDS. Today we will learn what the Coordination of Rare Diseases at Sanford (CoRDS) is doing to help people with rare disease.Liz will share important information because CoRDS is a registry that stores information on individuals affected by a rare disease to help accelerate research into rare diseases. It was developed because access to information about rare diseases presents a challenge to researchers, physicians, patients and their families.CoRDS provides a better way for researchers conducting research studies or clinical trials to search for individuals who are interested and may be able to participate in their clinical trial. The CoRDS registry also keeps individuals and families aware of the opportunities to participate in research studies or clinical trials.To help us celebrate the launch of the worlds first Cryoglobulinemia Vasculitis Organization (CVO) website Liz is joining us to educate us and help us learn more about important research opportunities.*To clarify: In reference to Mayo Clinic. Diane meant to say the one in MN is the only one of the Mayo clinics that is dealing with Cryo at this time. Not that it's the only clinic dealing with cryo.http://www.cryoglobulinemiavasculitis.org/
In this show, Ed Becker talks about how the loss of a family member to a rare vasculitis disease called Polyarteritis Nodosa (PAN) ultimately led to the creation of an international patient advocacy organization called the PAN Support Network (PSN). He will discuss how the group has grown into a 600+ organization that has become instrumental in helping PAN patients get the help they need to deal with the illness. He will be joined by Dr. Kim Carroll who became the PSN Forum moderator in 2012. Dr. Carroll ironically got involved in rheumatology also because of the loss of a family member to PAN. http://www.linkedin.com/in/edwardbecker Show will be 9 a.m. PT, 10a.m. MST, 11 a.m. Central time, and 12 noon Eastern time.
The show today will be about living with an exotic ailment called Behcet’s Disease.
Behçet's disease is common in the Middle East, Asia, and Japan. It is rare in the United States. In Middle Eastern and Asian countries, the disease affects more men than women. In the United States, it affects more women than men. Behçet's disease tends to develop in people in their 20's or 30's, but people of all ages can develop this disease.
Behçet's disease is an autoimmune disease that results from damage to blood vessels throughout the body, particularly veins. In an autoimmune disease, the immune system attacks and harms the bodies' own tissues. The exact cause of Behçet's disease is unknown. Most symptoms of the disease are caused by vasculitis (an inflammation of the blood vessels).
Inflammation is a characteristic reaction of the body to injury or disease and is marked by four signs: swelling, redness, heat, and pain. Doctors think that an autoimmune reaction may cause the blood vessels to become inflamed, but they do not know what triggers this reaction.
Marcia Cody,RN will have a conversation with Betty McDaniels Smith, Founder of Multi-Development Services of Spark County, Wellnes Coach, Author and Host of "On Track with Betty Mac" on Canton City Schools TV11 Channel in Canton Ohio, about a frequently misdiagnosed type of headache. Listen in, call in or chat with us about this interesting topic.
Occipital Neuralgia, a distinct type of headache characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head. Typically, the pain of occipital neuralgia begins in the neck and then spreads upwards. Some individuals will also experience pain in the scalp, forehead, and behind the eyes. The location of pain is related to the areas supplied by the greater and lesser occipital nerves, which run from the area where the spinal column meets the neck, up to the scalp at the back of the head. The pain is caused by irritation or injury to the nerves, which can be the result of trauma to the back of the head, pinching of the nerves by overly tight neck muscles, compression of the nerve as it leaves the spine due to osteoarthritis, or tumors or other types of lesions in the neck. Localized inflammation or infection, gout, diabetes, blood vessel inflammation (vasculitis), and frequent lengthy periods of keeping the head in a downward and forward position are also associated with occipital neuralgia. In many cases, however, no cause can be found. A positive response (relief from pain) after an anesthetic nerve block will confirm the diagnosis.
Occipital neuralgia is not a life-threatening condition. Recovery is usually complete after the bout of pain has ended and the nerve damage repaired or lessened.
This information was extracted from the National Institute of Neurological Disorders and Stroke (NINDS),National Institutes of Health website.
More info: www.theacpa.org www.headaches.org
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