Gastro research is drastically UNDER FUNDED. It is not "glamorous" and rarely on the radar for celebrities and focus groups, and rarely attracts public interest unlike cardiac care and cancer research. Gastro conditions are badly neglected in the UK when it comes to research funding allocation but without research treatment and outcomes are not likely to improve much.
Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research. There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database. GOSH are running a Gastro Research Project that will include related conditions/problems.
Alarmingly, children with allergic gut conditions are reaching epidemic proportions according to GOSH as our Consultant there explains in this video (celebrating 100 years of Great Ormond Street Hospital, screened on Daybreak in Spring 2012) At 6min 17sec in he speaks about the significant problem this is becoming.
No one knows why the UK has the highest incidence for Allergy. I went to Westminster to attend the All Party Group for Allergy in October 2013 and heard how in the 19th Century, a study into Hay Fever took two decades as it was so rare and there were insufficient people to include in the study. Today it is incredibly common. The UK tops the league table in the incidence of allergy in its population, with Australia second - which is interesting as their population obviously share a similar root. Allergic gut conditions are becoming common and hugely problematic for NHS paediatric services and Eosinophilic Disease is a specific subset of this group.
FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.
Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research. There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database. GOSH are running a Gastro Research Project that will include related conditions/problems.
Alarmingly, children with allergic gut conditions are reaching epidemic proportions according to GOSH as our Consultant there explains in this video (celebrating 100 years of Great Ormond Street Hospital, screened on Daybreak in Spring 2012) At 6min 17sec in he speaks about the significant problem this is becoming.
No one knows why the UK has the highest incidence for Allergy. I went to Westminster to attend the All Party Group for Allergy in October 2013 and heard how in the 19th Century, a study into Hay Fever took two decades as it was so rare and there were insufficient people to include in the study. Today it is incredibly common. The UK tops the league table in the incidence of allergy in its population, with Australia second - which is interesting as their population obviously share a similar root. Allergic gut conditions are becoming common and hugely problematic for NHS paediatric services and Eosinophilic Disease is a specific subset of this group.
FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.
FABED are UK partners supporting the United States Eosinophilic Awareness Week. This is coordinated by APFED. Two years they made this video to promote awareness.
During Eosinophilic Awareness Week, do something to raise awareness. Tell someone about EGID and the appalling lack of funding for gastrointestinal disorders in the UK.
It is so frustrating that this is so highly underresearched, knowledge is power with dietary issues and so having this knowledge would be invaluable to such a huge number of people, well done for raising awareness
ReplyDeleteA child my son goes to preschool with has this disorder, often spending weeks in GOSH at a time.
ReplyDeleteSuch ashamed that this matter is not being look after and unfounded. Would share for you. #blogsupport
ReplyDeleteIt is awful. My son hasn't got anything serious but he has an intolerance to dairy and soya and it took lots of trips to the doctors to get them to even take notice and it was my midwife that diagnosed him in the end. Then I was told he couldn't see a dietician and we would have to try trial and error when feeding him which is not what you want to do to a baby. I find it very strange that just a few years ago I knew no children with the problem yet now lots of friends have had children with intolerances. Something must be causing the sudden increase in all these allergies?
ReplyDeleteI have heard of this before but it is such a shame there is so little support offered
ReplyDeleteIt's so wrong that it is so underfunded. I shall be sharing this to try and drum up support
ReplyDeleteSuch a shame that there is so little funding and information about this.I had never heard of this before.
ReplyDeleteThanks for posting this and raising awareness Kate. Your sites have provided a wealth of information to me #MBPW
ReplyDeleteOh gosh just seen this, hope people can help out /x
ReplyDeleteA great cause to be raising awareness of. I don't really have any knowledge of this so thank you for the information.
ReplyDeleteIt is a shame that the less glamorous conditions get so little funding and coverage. Good on you for doing your bit to raise awareness.
ReplyDeleteLove Vicky
http://www.aroundandupsidedown.co.uk/
Aww poor mite. My youngest suffers from a bowel problem which so far they have been unable to determine what it is and how to combat. Its so awful as a parent when you just want your child to be well.
ReplyDeleteGood on you on raising awareness. It's a shame that funding for all diseases can't be spread more equally - we live in a world with such medical advances, yet we still don't seem to be able to fight them all. Thank you for sharing your story xx
ReplyDeleteThamkyou for sharing. I suffer with IBS and a friend has Crohns disease so definitely agree more research is needed.
ReplyDeleteYou are right about certain illness's not getting recognition. It does seem to be the same illness's each time. x
ReplyDeleteI suffer with hay fever every year since I moved to UK and my scalp and skin seems to have some weird periods during spring/summer. I'm not bothered with doctors anymore ;( Thank you for sharing!
ReplyDeleteI am really fed up with certain conditions being under funded. I am fighting for a referral for dermatology at the moment but because its not life threatening they can't afford it :0( - anything that causes discomfort should be treated and investigated
ReplyDeleteMy husband has gastro problems ever since he had an ulcer in his bowel a couple of years ago. He's received no advice since his operation and has constant problems and pain.
ReplyDeleteMedical research funding really doesn't seem to be allocated fairly at all does it?
ReplyDeleteThanks for raising awareness x
I hadn't heard of this before so thanks for bringing it to my attention. I'm sharing to help raise awareness :)
ReplyDeleteI'm not heard of this before! Thanks for sharing! x
ReplyDeleteIt's such a shame that the research is underfunded but great that you are helping to raise awareness of it.
ReplyDeleteFantastic to help raise awareness to something that isn't well known and so important to know about. It's awful that there isn't enough funding. Always seems the way for such important issues at hand. Thank you so much for linking up to Share With Me and informing me on something I hadn't heard of before. i will be sure to keep an eye out for more about it. Hope to see you again soon. #sharewithme
ReplyDeleteI am sorry that I am not very well informed of this. I am not a bit aware of it cuz of this post and I will continue to read your blog to know more about it. I hope that through this you can reach more people and I dont know hopefully get the attention it needs to be heard and seen and taken seriously for a research fund. Thanks for sharing your knowledge #ShareWithMe
ReplyDelete