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I am considering initiating a charity organization for celiac disease.

I supported one but they are so passive.

After all these years, this Chronic illness would have been allocated better government resources if they actually were involved in making progress. Just distributing foods and having days of yapping at a group of people who can't afford their diet is useless af.

It frustrates me how everything is half-ass done. I hate half-assed work.
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Miram · 31-35, F
@SwampFlower

Unmanaged celiac disease is linked to a number of cancers. I am convinced that my family successability to such way range of cancers is linked to the genetic expression of autoimmune diseases in general.

So many professionals look at it recklessly unless the symptoms are sever. But in many cases the absence of any symptoms can mean the inability to detect sever complications until it is too late.

I have family members who died because of this negligence.

Can't emphasize how prevelant it is to underestimate it. I had a pharmacist insist a patient of mine buys a medication that contained gluten under the same reasoning your provided .."least of your problems"..no bish. Try suffering hernias, perforated gut, Chronic inflammation, eczema and over hundred symptoms all which can be mis-attributed and complicate whatever the patient is seeking treatment for.

And if you really dig into why they insist on brushing it off as nothing, you will only find it is a form of laziness or another.
SwampFlower · 31-35, F
@Miram Mine was found incidentally and I feel it has never really been taken seriously by medical professionals. Actually they didn’t even tell me I had it at first, I found it in a biopsy note in my records and pushed for the rest of the testing.
Gibbon · 70-79, M
@SwampFlower Hospital food is bad enough as a patient without having to worry if they are giving you food that will harm you.
It's off the topic but the way they calculated my fast acting insulin sliding scale made no sense and a computer was doing the calculations. I was shaking my head every time they measured my levels.
What would your org do specifically?
Miram · 31-35, F
@BlueGreenGrey exhaust governmental avenues to list celiac disease with other chronic illnesses, provide insurance for related screenings, lower food prices, more regulations against companies who claim to produce gluten free that's not well tested.

I want actual change. Not bandaids.
Miram · 31-35, F
@BlueGreenGrey I need the government to take over and include it with other chronic illnesses under the disability act.
@Miram if you move forward with this idea I hope you are successful and it yields substantive change and truly benefits those who need it

 
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