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Body Donation for Sjogrens Syndrome Research

Started by lighthouse33, September 30, 2017, 01:36:05 PM

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lighthouse33

I have decided that when I die, I want to donate my body for Sjogrens Syndrome Research.

The only company that I can find that has Sjogen's Syndrome listed in the US is BioGift, and they do not take bodies from the state of North Carolina where I reside.

Johns Hopkins' has the Jerome L. Greene Sjogren's Syndrome Center, and, I have sent an e-mail to them as well as to the Sjogrens Syndrome Founcation.

Thank you for any help that you can provide me.


Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

MAT51

I think this is a great idea. Hopefully I'm a good way off but I think I'd like to do the same when I die. I'm in Scotland, UK though so haven't looked into this yet and can't give you any advice at all.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

anita

Johns Hopkins doesn't accept outside body donations for any research.  I asked them many years ago.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

lighthouse33

Quote from: anita on October 01, 2017, 08:24:14 PM
Johns Hopkins doesn't accept outside body donations for any research.  I asked them many years ago.

Thank you for letting me know.  I may have to donate my body without it going to Sjogren's research.  It would still do good things such as looking for a cure for cancer, Alzheimer's, osteoporosis or helping with medical training etc.
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

Scottietottie

Hi  :)

I'm another body donor - but not specified for SjS. I carry a 'body donation card' in my purse.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

jazzlover

I've never really wanted to do this .. and I won't, but something a nurse friend told me a few weeks ago confirmed this for me.

She said she went to a class once where there were about 20 HEADS of people on tables. She was NOT prepared for that.

No thanks.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease

Scottietottie

Once I'm dead I don't care. They have to practice on something!  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

gurs

I dont see SS listed On Bio's website? was just looking into this..funny!
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements