Dr. C: This is a deceptively simple question. It is difficult to provide a precise answer lacking some additional background information. How often is your partner correct to wait? Are there certain symptoms that predictable for an HAE attack? Are there other confounding health conditions? How do we convince a loved one to do anything […]Read more... QOTW “Should patients with HAE be organ donors?”
Dr. C: I would like to thank Janet Long for passing on this question—an interesting counterpoint to our discussion last week on the role of liver transplantation for HAE. To answer our reader I took the following from the government website for organ donation “Medical Condition? You may still be able to donate your organs. […]Read more... QOTW – “Since C1inh is produced in the liver would a liver transplant be a cure for an HAE patient?”
Dr. C: I would like to wish everyone a Happy Fourth of July–we have much to celebrate. Our reader raises the tantalizing question of a way to “cure” HAE. This will give us the opportunity to indulge in one of our favorite activities during these discussions—speculation. As best I am aware there has not been […]Read more... “I know that the number of men and women with HAE is about equal. Are the frequency of attacks equal between the sexes?”
Dr. C:We thank our reader for this interesting question. Certainly for HAE C1inh the expression of disease is equal between men and women reflecting the fully penetrant, autosomal dominant pattern of inheritance for HAE types I and II. Our reader’s question explores whether differences between men and women could affect the severity of disease. We […]Read more... “With the new Zika virus infections, are doctors worried about giving virally infected plasma products to HAE patients?”
Dr. C: This is a timely topic to discuss. Why are we worried about Zika virus (ZIKV)? ZIKV is a mosquito borne flavivirus, a member of the Flaviviridae family, which includes dengue, yellow fever, and West Nile among others. It was originally isolated from a sentinel primate in Uganda in 1947. Until recently ZIKV was […]Read more... QOTW – Can you provide some suggestions for those patients that benefit from the C1inh but have problems with veins so are unable to self infuse? Not all physicians agree with ports or are ready to introduce C1 inh subcutaneously as of yet–not approved of available in other countries?
Dr. C: Another excellent question from the HAEi gathering in Madrid. I think that we sort of missed the boat when C1 inh first became available for treatment. The Hemophilia model of self-infusion with emphasis on protection of the veins should have been immediately adopted. We still have much to learn from their example. Multiple […]Read more... QOTW – We know about the relationship between HAE attacks and puberty. Is there any relationship between men aging and lowered testosterone?
Dr. C: Greetings and I hope you all had a Happy Memorial day. We honor all those who have served. This is a question from our recent gathering in Madrid for the global HAEi conference. I believe our reader is focusing on the flip side of increased estrogen triggering an escalation in attacks of swelling. […]Read more... QOTW – “What about those of us with idiopathic angioedema? Can you do something for those of us who do not have HAE?”
Dr. C: Greetings and Happy Mother’s Day. Our mission at the “US HAEA Angioedema Center” is to improve the lives of all patients with angioedema. The idiopathic diagnostic category can be particularly distressing for patients. The term is defined as “a disease or condition that arises spontaneously or for which the cause is unknown”—in other […]Read more... “How might I benefit from coming to the Angioedema Center? I have type I HAE and am on Cinryze. My doctor is helpful but has no other patients with HAE. Is there any support that would help me? I do not live close to San Diego.”
Dr. C: Greetings and Happy Passover. I hope that those of you celebrating will find creative ways to navigate the upcoming week of Matzo. I thank the reader for introducing this topic and their interest in the Angioedema Center. At the Center we have emphasized an integrated approach to care to optimize the utilization of […]Read more... QOTW – “Any idea as to when a test for bradykinin may be available to help finally diagnose HAE nl C1 INH?”
Dr. C: Happy Income Tax Time to all of our readers—may you all look forward to refunds. This question introduces what has been an ongoing problem for patients with HAE-nl-C1INH. With the exception of the factor XII mutation we have no biologic marker. The experience with drugs such as Kalbitor and Firazyr would support that […]Read more...