QOTW – ‘Is there a support group for caregivers/friends of HAE patients?’
Nov 16, 2015
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 affecting their loved ones that they had little control over. Even now with improved treatment and recognition, HAE patients critically need the support and advocacy of their friends and families to interface with the health system and help them cope during attacks. We do need to think about how to ‘support the support’ group. The ‘burden of disease’ is not just falling on the affected patient. The caregiver is also dealing with the stress of illness and the indirect impact on many sectors of their lives academically, professionally and personally. There is often an unexpressed guilt about not doing more and anxiety that what they are doing may not be entirely correct. Marc, what thoughts do you have for our reader?
In my consultations with patients, I encourage conversations with family, caregivers, and friends to ensure their concerns are discussed. With regard to specific support groups, I refer families to the US HAEA for the most up to date resources available.
Thank you Marc. I spoke with the HAEA regarding their efforts and plans in this area. In the past they have held gatherings for caregivers but it was difficult to reach significant numbers of caregivers. As is the case for HAE patients who are scattered across the US and often feel isolated, the internet may provide a pathway for caregivers to interact and find support. The HAEA is planning to have a platform in their newly developed HAEA Café that will be a way for caregivers, friends and families to connect with one another. It is also on their agenda to offer more resources on their new website directed toward caregivers of patients with HAE. This may be a consideration for a program as well at a patient summit. Bruce, what ideas or experience have you had that you would like to share?
I think that I organized my first HAE patient group meeting circa 1990. I’ll never forget how surprised, joyful, and even tearful people were to get to meet other families with HAE. I had thought that the meeting would focus on my research projects, but instead we spent almost the entire day having patients and family members talk and connect with each other. It was an amazing experience. Since then, we’ve seen the internet change everything. The ability to communicate online was formative for the US HAEA. My original meeting of about 25 patients is now dwarfed by patient summits with many hundreds of patients and family members attending. Yet, the goals and the values remain unchanged. You are not alone. By working together we’ve shown that we can achieve what had been unimaginable even a short time ago. I think that the HAEA Café is an outstanding way for patients and caregivers to support each other and push towards an even better future. The US HAEA got it right – patients helping patients. In my opinion, caregivers are part of this same patient community and should look for support to the US HAEA.
Thank you, Bruce and Marc. I believe that this discussion is the start of improved awareness and development of resources for those who support the patients with HAE. Remember that as a caregiver or friend what you lovingly give to a patient with HAE is really yourself. It is important to have the resources you need to stay well and focused—in that you insure that your ‘gift’ will remain ‘worth giving’. I would like to remind all of our readers to send in questions that you are interested in having us discuss. We look forward to hearing from you and our next ‘Question of the Week’.