Global Action will be attending the Foundation’s Baltimore aHUS patients conference from the 28th to the 30th April.
Here you will find out about the events and the people we meet along the way.
Friday April 28th U.K.
Well it has been very wet in Baltimore all day today. News has been coming in about journeys and non journeys in some case of Global and CAB members. But time to relax in the Marriot Hotel. Unless you are Dave Deffenbaugh that is , he has been a blur of activity getting the conference area ready for tonight. He says he is a bit rusty after over three have passed since the last Foundation conference.
A view of Camden Yards, home of Baltimore Orioles and the wet streets from the Conference Hotel.
Friday Night, April 28, 2023
Registration & aHUS Store after collecting conference badges and “goody” bags everyone stood and chatted to people they had maybe only seen in the social media and on “zoom”. I met Bethany Lovegrove for the first time and caught up a bit on aHUS news.
This is what it is like at these gathering the conversation about aHUS does not stop. I sat at a table for diner with Stephanie Lotz and her husband from Ohio. Stephanie has supported Global Actions research efforts in the past and contributed to the aHUS Awareness Day and Rare Disease Day videos.
After dinner Dave Deffenbaugh , Foundation Chair, welcomed everyone to the conference , the first since COVID. after being introduced to several of the guests, all delegates got to introduce themselves and their families and their connection to aHUS. It was remarkable how many states got mentioned.
Then Donna Kolp, a Foundation Director, talked about her son Jonathan and their experience of aHUS these past thirty years.
Then it was a quick chat to Anuja Java , one of the conference speakers. More about her later.
As the conference will be starting at 8 am tomorrow an early night was needed.
29 April 2023
Up early for breakfast and conference start at 8am. Up gets Dave Deffenbaugh again to kick the conference off listing things that have changed since 2019. One fact which put the U.K. way ahead of the USA is that we have gone through four Prime Minister whilst the USA has only had two Presidents Although not mentioned we also have had two Monarchs!
Dave then went through the agenda for the day. He finished by summarising the development of the aHUS Foundation and how the current logo was designed.
Then it was on to the first aHUS talks for the day and I joined the aHUS for newcomers session given by Shruti Chatuvedi from John Hopkins Hospital, Baltimore.
She went through what aHUS is , what causes it and the genetics of the Complement System . She talked the classification of aHUS including the difference between primary and secondary aHUS. Before moving on to the important matter of getting a diagnosis. She then covered treatment current and future options and the side effects of treatment including the risk of meningococcal infection. Shruti then moved on to that stopping treatment matter and finished with the long term patient outcomes , like fatigue and anxiety. Pausing for breath that was some presentation. Then questions were asked and those attending began talking about their experiences.
Time for a break.
Followed by a Q&A session with all the clinical speakers
The next session was given by Stephanie Hohn a psychotherapist . She talked about medical trauma and how it manifests in fight or flight or freeze and fawn response in individuals who have faced a life threaten event like aHUS. Global Action has identified “Long aHUS” as a concept to physical and psychological legacies of the aHUS car crash. Tomorrow we will learn about learning to cope with it.
Dr Shruti Chaturvedi
Lunch followed by a talk on aHUS Genetics , then aHUS and Pregnancy and thinking about children with aHUS as young adults by doctors Anuja Java , Shruti Chaturvedi and Brad Dixon in turn.
Dr Brad Dixon
On to the mid afternoon break
In the break, the opportunity was taken to present Anuja with a big cookie. Those viewers who followed the “Nephmadness event on the website and on Twitter this March will understand the joke.
Anuja and I with the personalised cookie….
That evening the theme was “tailgate party” based on the tradition of having food and drink before a sports event .To add to that atmosphere delegates were dressed in the favourite sports team shirts. The combination of refreshments and informality created a unique atmosphere that you had to pinch yourself to the reality that everyone there had been affected and touched by a serious life threatening illness. That night it was forgotten and people were just themselves.
Up early again for breakfast to start the final morning of the conference. Up first was Dr Anuja Java. This time the talk was about factors which underpin and inform a patient’s decision to stop complement inhibitor treatment safely.
Stephanie Hohn followed her previous days talk about clinical trauma with simple techniques to alleviate the stress that comes with it. Delegates were “belly breathing” or “alternating nostril breathing” in unison two simple techniques among several that Stephanie recommended.
The next speaker was frantically belly breathing as he prepared to give his ( the author’s) talk to conference. The e was aHUS patient advocacy and how it develops from a specific aim to world wide matters. How over 10 years of aHUS advocacy had resulted in a Global aHUS Community Advisory Board or aHUS CAB. The scope of aHUS topics it addresses is extensive and each could be looked at in intensively. Three examples of such topics , patient preference for treatment options, stopping complement treatment safely or messages about adverse events like meningococcal infection. 10 of the aHUS CAB were in town to meet with Pharma.
Soon the conference was coming to a close. There had talks, videos, shops and information tables , chatting and laughter and an anticipation of doing something like this again sometime.
It may be the first since COVID but not the last surely!
So been there ,done it, got the T shirt…
Article No 578
