The Second National Gitelman and Bartter Patient Day

report by Natalie Gee

 

On Saturday 13th June the second National Gitelman and Bartter Syndromes Patient Support Day was held in London at Resource for London conference centre. Family, friends and partners, children, and people affected with these conditions, all gathered to share information, friendship and support. Attendees came from across the country, far and wide, and also from as far away as Denmark. Around 120 people attended, so it was a great turn out.

The day started with a meet and greet session followed by a social registration and coffee, as well as plenty of salty snacks. This gave people a chance to chat before the proceedings really got underway.

Professor Fiona Karet opened the day with a warm welcoming speech, explaining the day’s events and schedule.

This was followed by a talk from Elaine Corden, a dietician from Addenbrookes Hospital, explaining the needs for those affected by Bartters and Gitelmans to have a high potassium, magnesium, and sodium (salt) diet.

She clearly explained the different types of food which have the highest amounts of these minerals, as well as giving examples as to how we can introduce them into our day to day diet.

The powerpoint presentation was extremely informative and highlighted which foodstuffs were higher in amounts of potassium, magnesium, and sodium than others.

 

 

The next to speak was Dr Detlef Bockenhauer, who followed on nicely from Elaine, by talking about “Your Genes and your need for salt: Gitelman/Bartters 101”.

This was a brilliantly informative speech which, first of all, talked about what is Gitelman and Barrter syndrome? He then went on to explain how the kidneys work (in an easy to understand way) and went on to mention about the need for salt and how salt and salt loss is key to these disorders. He used a very clever “robot” analogy which really explained the ins and outs of why salt is so important in these conditions.

 

 

Dr Ben Walsh followed, with his informative speech, talking about “Treatments for Gitelman and Bartters Patients”. It covered aims of treatments, the benefits of salt, different potassium and magnesium supplement drugs, as well as other treatments used (Non Steroidal Anti-Inflammatory Drugs, ACE inhibitors, and Aldosterone inhibitors).

He went on to discuss the potential future treatments, trials and research projects highlighting current research into the use of :

4 Phenylbutyrate – which has seen positive results in petri dishies in the lab

Tacrolimus- which increases the NCC in the kidney

 

It was then time for the first of the day’s breakout sessions which you could choose from:-

Patient sharing stories

Partners sharing stories
Pregnancy and what to expect from your GS/BS
Being a parent of someone with GS/BS
Under 16 session
I’d like to help support GS/BS

 

These were most helpful and supportive. In small groups people listened and gained advice and this gave an insight from other patients living with GS/BS and their experiences.

After the breakout sessions it was time for a high salt lunch, which was yummy, and we were supplied with all the salty foods and coconut water to drink that we could possibly want! This also was a great opportunity to follow on from the groups and to have a wonderful chat with other people.

After lunch Dr Hugh Gallagher spoke and explained the new protocol and documentation surrounding if you have to go into hospital for an operation, “I need and operation…what to expect” This  was so interesting and also vital for patients to be aware of the possible dangers surrounding anesthetic with GS/BS. Now the implementation is in place, it will hopefully be safer to have an operation with these conditions.

Then it was my turn to speak about my patient story and life experiences and how this led me to create the patient support website. I was pretty nervous but I can only hope that the message came across that we are all in this together and that we can help and support each other.

This was followed by the second Breakout sessions. I headed up the “I’d like to help support GS/BS” which saw some wonderful responses, suggestions and ideas. I hope to move on from this in the future to put many of these ideas in place, with the help from other group members.

The day ended with coffee and cake and further chats about the next meet up.

A quote from the day : “I felt that it was very informative and the people who were there were genuinely there to help us. They gave up their time on a weekend when they could have been doing something for themselves. I no longer feel alone, and my weird eating habits are completely normal.” – Sara Locke

 

 

 

 

A downloadable programme of the day is available below.

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