Aspergillosis Patient & Carer Support

Many hands symbolising people coming together and caring and coming together to help each other with their aspergillosis.

Here at the National Aspergillosis Centre, we understand the importance of providing support and pride ourselves on bringing those affected by aspergillosis together.

 

Through our social media channels, our virtual weekly support group and monthly patient meetings, we provide accessible platforms where people can ask questions, share their experiences of life with aspergillosis, and express their emotions and frustrations – with people who understand first-hand. Our members regularly share anecdotal advice and are an endless source of support and encouragement. The NAC team are always on hand to provide information, signpost to resources, and at each monthly meeting, we present on topics relevant to aspergillosis.

We have a weekly support group that meets (virtually) every Thursday at 10am and a more formal monthly meeting on the first Friday of every month, 1 – 3 pm. Everyone is welcome. The meetings are closed captioned, and you don’t have to be a NAC patient – in fact, you don’t even need to be in the UK – we welcome people from all over the world!

Alison Heckler is from New Zealand, and she has Allergic Bronchopulmonary Aspergillosis (ABPA). Alison was kind enough to tell us why, most weeks, she stays up way past her bedtime to join our weekly support meeting.

 

I joined the Aspergillosis Support Group when I was first diagnosed with aspergillosis. I was given zero information, so I was looking for a credible source of information. I was somewhat ill at the time, and one group member assured me that once my medication levels were right, I would get some level of life back.

 

Everyone was so encouraging while still being realistic and honest about the complexities of the condition.

Graham and others from the NAC team could answer questions from a knowledgeable, professional perspective, plus provide information on new research and developments.

 

I don’t know anyone in NZ who has Aspergillosis, so it’s nice to have a group of friends who will pick up on where I am at (health-wise), who don’t need explanations and have encouraging things to say.  They care from a position of relating and understanding that “looking well” doesn’t necessarily mean that I am.

It also helps, when I’m feeling particularly frustrated, to recognise that others are dealing with even more issues and puts things back in perspective.

 

Because the group is essentially British, the discussion often focuses on the NHS, but even that helps keep me in perspective. There is information to be gleaned. NZ has a similar Public Health System, and my current medical team seems to understand ABPA. For all its faults, I am very appreciative of what we have, especially when I have some understanding of systems in other countries.

 

I like the virtual meetings on Zoom because I am communicating with real people; it is not just an anonymous written feed.  We can joke and laugh together and share a little bit of our lives.  The slightly more directed conversations, often prompted by someone’s question, are informative and useful.  This then compliments the valuable articles posted on the support pages and website.

For more details and information on how to join our meetings, follow the links below:

Aspergillosis Patient & Carer Virtual Support Group, every Thursday 10am. 

Aspergillosis Monthly Patient & Carer Meeting, the first Friday of every month, 1 – 3pm.

 

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