Dr. C:This is an important topic and highlights an area where we need to develop more resources for HAE. In particular during those long years before having effective therapies in the US there was a lot of suffering and fear surrounding HAE. Families and friends were often coping with debilitating and at times life-threatening events […]Read more... QOTW – “Is there a way for our under informed doctors to consult with those who specialize in HAE so they can better treat us?”
Dr. C:This is of course a critical issue for patients with a rare disease like HAE. Regardless of your health problem you want to have faith and confidence in your physician. It is really building a partnership to optimize management. One of the central missions of the HAEA is to educate patients as well as […]Read more... QOTW – ‘What non-pharmaceutical treatments are available and being supported by HAEA and the physicians?’
Dr. C:This is a wonderful topic. We are fortunate to have the medical treatments that are now available for HAE and more to come. I do strongly believe that we should take an integrative approach to care. Particularly for patients struggling with a condition like HAE it is important to look toward any aspect of […]Read more... ‘If a child has tested negative (ages 5-10) should they be retested? If so, how much after the first testing?’
Dr. C: As many of you heard at the HAEA patient summit this is ‘The Year of the Youth’—here is another of the ‘unanswered questions’ from the meeting. It is critical to have children tested for HAE if there is an affected parent. Families can then establish an effective treatment plan to ‘be prepared’. We […]Read more... QOTW – Would a CT Scan help with a definitive diagnosis of HAE with normal C1?
‘I am working on getting a CT scan (as requested by my physician). I’ve been told it may help in regards to a possible definitive diagnosis of HAE with normal C1. Is there truth to this and what exactly does a CT scan show during an attack?’ Dr. C:It was wonderful to see everyone at […]Read more... QOTW – “Is there any benefit from Xolair use in HAE?”
Dr. C:We would like to thank Sally Urbaniak from the HAEA patient services team for forwarding this question. There have evidently been online discussions regarding the use of Xolair for treatment of HAE. I am not aware of any study that would indicate that Xolair is of therapeutic benefit for HAE Type I, II or […]Read more... QOTW – Will genital swelling that some HAE patients experience cause issues down the road?
“I have a son with HAE type 1. He is in his early teens and has had episodes where his testes will swell. We do have on demand treatment, which allowed the swelling to resolve over 36 hours. He is worried that the swelling may cause future problems with normal sexual function down the road. […]Read more... QOTW – “Can someone be a carrier for HAE and not express any symptoms?”
Dr. C:We would like to thank Janet Long from the HAEA for forwarding this question. I believe that this topic is of considerable interest for HAE patients and their families. The answer to our readers question is of course is a bit complicated. Dr Z and I have previously discussed the inheritance patterns of HAE […]Read more... “My doctor would like to start me on a medication for depression and stress, is there any reason to be concerned that this will affect my HAE?”
Dr. C:It is always important to think about the interplay of different health problems and medication use before initiating any therapy. It is an opportune time to remind our readers of drugs that can worsen the severity or swelling in HAE. An important group is the family of blood pressure medications that block the ACE […]Read more... QOTW – “Is it possible to build an algorithm for the ED to help improve the recognition and treatment of HAE?”
Dr. C: This is an excellent question. We continue to hear stories of HAE patients receiving inappropriate care even when they are armed with action plans. Sadly there are still reported deaths in the ED. Given the importance for all patients with angioedema an effort has been initiated to upgrade there cognition and care in […]Read more...