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Post by natalie on Dec 29, 2020 14:23:36 GMT 1
I’m looking into the possibility of having another Gitelman’s Syndrome patient day in 2022?
I was supposed to have one this year, but a global pandemic put play to that idea!!
So thoughts and ideas would be most welcome.
I’m hoping this patient day would be more informal then previous years. With more break away groups for specific topics.
Any ideas or contributions would be welcomed
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stephp
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Post by stephp on Jan 29, 2021 16:51:46 GMT 1
An Online GS / BS Patient Day could be conducted? As everything is online during this pandemic we could invite some experts to give us their input on the current state of research etc via Zoom / MS Teams
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Post by natalie on Feb 18, 2021 9:25:45 GMT 1
Well I’m hoping by 2022 we will be in a better position to have an actual face to face patient day. Last patient day we had 80 people attend and before that 120 so it’s positive for a good attendance,
Many factors will need to be considered. Funding first of all a sponsor and catering and inviting Drs and consultants to speak with us.
I’ve arranged the last two.
But as you say online zoom with 80 people is tough to manage.
The other option is purely informative based with a video or slides available.
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Post by violetlight on Jul 23, 2021 23:04:12 GMT 1
I’m looking into the possibility of having another Gitelman’s Syndrome patient day in 2022? I was supposed to have one this year, but a global pandemic put play to that idea!! So thoughts and ideas would be most welcome. I’m hoping this patient day would be more informal then previous years. With more break away groups for specific topics. Any ideas or contributions would be welcomed Hi Natalie, I am new here and don't know anything about the previous patient days you've had, but I would love to attend one in 2022 even if I have to travel far. One thing that has affected my life a lot that I don't hear talked about much is the impacts of fatigue, irritability and other symptoms on personal and professional relationships. Obviously before being diagnosed it played out different for me than after diagnosis, but I wonder if other folks would be interested in that as a discussion topic. Also sports/physical exertion/travel. I can always help with a good salty snack spread if you need assistance for that 😂 |
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Post by violetlight on Jul 23, 2021 23:08:13 GMT 1
I wonder if one of those electrolyte tab companies would help sponsor?
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Post by natalie on Jul 26, 2021 5:32:54 GMT 1
Thanks Violet for the input , yes an electrolyte sponsor sounds a good idea.
Yes next patient day we can go over topics of anything. But yes it’s import to discuss the emotional impact of living with a rare chronic disease. The drs can give us the medical info, but actually the day to day living is complex.
These times of covid has often compounded the feeling of anxiety and fear that we face. We’ve had less face to face contact with drs or GP’s , less understanding and less information about how covid would effect us. ( we’ve most been told it wouldn’t harm us as much as people with king conditions etc) I’m not sure that’s true. Drs don’t recognise the issue with potassium loss etc and they certainly dot understand covid in rare disease.
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Post by natalie on Jan 31, 2022 0:05:46 GMT 1
Covid restrictions put a lot of my funding and organisation on hold for a patient day 2022 but I’m still hopeful that by the end of this year we might be able to have a small gathering for information, support and awareness and a social aspect to the day.
I’ll keep you posted
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Post by violetlight on Jan 31, 2022 2:13:45 GMT 1
Hi Natalie,
Thanks for the update! Just checking - would it be a UK citizens only event or could anyone attend?
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lynnh
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Post by lynnh on Feb 28, 2022 18:37:06 GMT 1
I would definitely be interested meeting other people living with GS. We are in south east england so would depend on where and when, but definitely interested. Thank you
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Post by karene on Nov 12, 2022 8:29:48 GMT 1
Hi
I'm not sure if this group is still active. If it is and if a Gitelman patient day is in the works I would love to attend. I am a Canadian Expat, currently living in Albania but am quite willing to travel to the UK for an event such as that.
Thanks
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Post by natalie on Nov 12, 2022 9:48:40 GMT 1
Yes it’s ongoing and it’s active as much as I can ( I’m quite poorly at the moment, as I have a spinal cord injury too and other medical complexities that makes life tricky as well as my GS) - but. I am trying to get funding for another patient day soon and in meetings with Addenbrookes and Royal Free hospital in the UK often.
But in all honestly the money to fund an event at the present time is a real struggle.
But no one is forgotten and as much as I can I will Endeavour to make this happen.
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lynnh
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Post by lynnh on Sept 18, 2023 14:44:54 GMT 1
Hello Natalie. I dont know if this message will reach you as I dont think many people use this forum - at least not a regular basis, but I was wondering if there was any news about a Gitelman Patients Day? I live in South east England and would dearly love the chance to meet up with other patients and families who live with Gitelman. My 11 yr old daughter was diagnosed in 2020 and whilst my eldest (17 years) has the same genetic defect, she has no symptoms. I would certainly be interested in attending a patients day if one was arranged but have no idea how these things happen...or who leads them. Many thanks, Lynn
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