There is a new and huge genetic study going into AI Diseases like RA and our local hospital is taking part. So I was selected and today agreed to give blood and allow access to my medical records. They did want lot of blood but they are hoping to identify which gene is responsible for RA so a new form of treatment can be developed. It won't affect me, but for my granddaughter it might if she is unlucky enough to get the gene, mean that it can be stopped. So exciting to be advised that because they already know I'm pANCA from Nephrology that they really wanted my blood. I'll be contacted if they need more or are willing to help further. I said of course ! so if your going to se your RA consultant in the next few weeks you may also be asked to take part. Isn't it great, at last some research in the general population with RA to seek to determine why some get these diseases and how treatment can be targeted in the future.
Good News and I've done my bit!: There is a new and... - NRAS
Good News and I've done my bit!
👏🏻👏🏻👏🏻 That's excellent. Well done. 🩷 xx
Yes if the scientists can id a gene then hurrah its going to be short step for much more effective treatments for so many people. Especially youngsters. The Bio scientist said that the way things are moving so much is now known and it's going to be vastly different in time to come. I also was asked to go on the permanat stored genetic database, no idea what that does but hey ho it can't hurt. lol xxx
Gosh that really is exciting isn’t it. There you are at the cutting edge of science. x
Lol
brilliant news
Well done M-L. What a coincidence….I have signed up for a similar research project just this morning! It all happened quite by chance….I went for a blood test (having liver issue due to meds at the moment) and they were busy so the research ladies were helping out. I got talking to them about one thing and another and they asked me to consider joining the program - so I did! Like you say, it most likely won’t benefit us directly but maybe, just maybe, they may find a cure for future generations.
Well done, it seems as though a lot of research is going on to change the future for the better. X
Is this a genetic study into all autoimmune diseases or just RA do you know? I asked a young geneticist about studies into AI diseases recently when seeing him for other hereditary stuff and he wasn't to helpful - just said that they might find a gene for each AI disease but if a person only had a low % chance of inheriting it then not v helpful because they would be worrying all the time about every vague symptom? I found his perspectve a bit frustrating but he did arrange a rare (pediatric) DNA bloods panel to be run on me results to be held in my university teaching hospital for up to 30 years after my death. I won't get results back unil mid August.
I'm not sure exactly but I'm willing to support any research in whatever way I can. I know that we tend to think of genes as being hereditary but what if they found something that triggered a mutation to a healthy gene? This may lead to a drug that could correct that mutation maybe, who knows? Well done for helping with genetic research old Ted. Science may just have the answer one day.
Well done for taking part and it’s an interesting study to see if genetics play a part. One of the first things the rheumatologist asks is if anyone in your family has RA. It would be good to find the genes that potentially cause this 🤞🏻🤞🏻🤞🏻
That’s great. Like you I would be happy to help & have done a few studies in the past but not like this specific one. I have no family history & have a lot of AI diseases RA with Psoriatic crossover, Hypothyroidism, Asthma Excema Lichen Planus & more so find this type of study really interesting.
You might well be asked then at your next RA review. The scientist said its going to run a while and they've already done Bowel disease. This is next study and the home work questionnaire asked about Excema and Psoriasis. That run to a dozen pages but now sent off. I think it's great to help and I even like the idea of blood DNA being kept for future reference for scientific research. They said can withdraw if people want too but why would anyone not want to help and she said a few had which is sad really. I've signed up to be kept informed and it is really interesting to just give blood, a bit of time and access, and together we could help change the future of a disease. xx
I’ve just had an appointment last week & it wasn’t mentioned which is a shame. Myself & hubby recently took part in My future Health one run by NHS. They do usual BP pulse etc & BMI then Cholesterol check but also take blood for DNA testing. You are not involved in any results though. The Cholesterol is a pin prick one & you get results whilst there. It was in a unit in Tesco car park but was very professionally run. You get paid £10 but we donated ours. I might ask my Rheumy nurse as being adopted I have no family history so always keen to do this type of thing.
sounds interesting as I’ve often wondered if they are doing any genetic studies into RA as I was diagnosed 7 years ago but my identical twin sister doesn’t have it (lucky her!). That said I’m one of 9 children and some do suffer with AI type conditions - hashimoto disease, so I guess we may be predisposed to AI type conditions. Will check with my consultant next week.
Gosh, you and your identical twin could be ideal studies for that sort of thing couldn’t you.
I'm sorry your family is prone to these things but the curious side of me is thinking...how fascinating. I agree, you and your twin could prove to be excellent research subjects!
Thanks - happy to be a guinea pig if it helps in future treatment. My thinking is that our family may be pre- disposed to AI conditions but something in my history - environmental, diet, lifestyle may have ‘switched that on’. Also think that hormones can play a part so fertility treatment/IVF could play a part. Just a theory of course!
Wouldn't it be nice if they could find a way switch it off!!! 😄
Oddly enough I’ve had fertility treatment, so hormones might be involved. I don’t know obviously, but I wonder if the NRAS took a research blind survey we might all have something in common. I also think Corriander tastes like soap as does 20% of European people are we all related from centuries ago. I’m in a hotel as going to an Alfie Boe concert tonight as a birthday treat. Yippeee…..
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