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Heart Disease (Expert Forum)
Long QT/Ehlers-Danlos/Exericise induced anaphylaxis
This forum is for questions and support regarding heart issues such as: Angina, Angioplasty, Arrhythmia, Bypass Surgery, Cardiomyopathy, Coronary Artery Disease, Defibrillator, Heart Attack, Heart Disease, High Blood Pressure, Mitral Valve Prolapse, Pacemaker, PAD, Stenosis, Stress Tests.
Long QT/Ehlers-Danlos/Exericise induced anaphylaxis
by Fay__0, Dec 16, 1998 12:00AM
A family member, age 18, is experiencing Exercise Induced Anaphylaxis, and has a history of sudden death episode when given epinephrine 4 years ago. He has recently been diagnosed with Long QT. Several other familly members in 3 different generations are or have experienced the same kinds of medical issues, except the cardiac arrest. Are you aware of any other case histories in which the patient was diagnosed with Ehlers-Danlos, and also appeared to be having both systemic allergic reactions (hives, rash, low blood pressure, swelling, shortness of breath) as well as cardiac symptoms to his/her own adrenaline? The family member has been on high doses of 3 antihistamines with poor control, and began a course of steroids as of today. Other drug therapies are on hold until cleared for use by a cardiologist. The family member is undergoing eval at UCLA medical center but it's a slow process and We have trouble getting answers to questions. Help.....thanks...Fay
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Dear Fay,
Wow, your family certainly has its share of rare diseases. I suspect the reason that things are taking a while is that the issues are very complex. I have never heard of this particular combination before. Ehlers-Danlos is a connective tissue disease and I don't know how it would be connected to allergies or long QT. Obviously these are important questions and UCLA is certainly a top medical center. All my best wishes to the doctors who are undertaking this puzzle.
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