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Recent Terminal Diagnosis - End Stage Liver failure

I was diagnosed with end stage liver failure in February, unfortunately I have only gotten the bare minimum in regards to my future health plan, how to set up appointments with the specialists I need, prevent the disease from progressing in addition to my heart failure, supportive help/groups, and overall health/recovery/care. #LiverDisease #liver
#selfcare #wellness #Transplant #hepatologist #MedicalBills #MedicalProfessionals #MedicalResearch #nutrition #bilirubin #LiverFailure

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A breakthrough

A while ago I posted about research testing and how it has helped us find out my Mitochondrial Disease is likely linked to a defective NFS1 gene. Well I got a call today from my absolute favorite person in the research department. She has been with me since the beginning of my journey. She informed me that because of the testing they did on me they are beginning to find other people throughout the country that may have the same (extremely rare) type of Mitochondrial disease as me. AND they are trying to get approved to write an article about us. Hopefully this will eventually lead to a real diagnosis, since many doctors and people dismiss research diagnosis’s until they a properly approved. Maybe even years down the road we could find better treatment.

I just had to share this with everyone, it was a really proud moment for me. My persistence has paid off, I am helping others get the answers they deserve simply by not giving up until I got my answer. If and when this article does get published I will make sure to post a link, it may take a few months though, as we all know...anything medical takes forever 😂.

#MitochondrialDisease #NFS1gene #Mito #MedicalResearch #RareDiseases #ChronicIllness #CheerMeOn #InvisibleIllness #LacticAcidosis

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#Fibromyalgia We need proper #Research

We SO need more, and better, research done on Fibromyalgia. I know things to be true about what it does to me, and I've seen countless others stories. All of that tells me they need to know way more. And we have to be the ones to fight for it. Bug the crap out of your medical professionals, lawmakers, & patient advocates. Tell them we need help. Now. Too many are affected to keep letting it go on like this. I've been writing to organizations, government agencies, anyone I can think of. If enough of us do this, maybe they'll pay attention. For more, visit me at Written by Dida. Link in profile #fibrowarriors #fibromyalgiaawareness #Fibromyalgia #invisibleillnesswarrior #InvisibleIllness #ChronicIllness #MedicalResearch #Spoonies #chronicpainawareness #ChronicPain

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Operation Regrow JUNE 17 #HearingLoss #HardOfHearing #MedicalResearch #Deaf #DeafCommunity

I am grateful for the impact you have on the lives of individuals like Sonya, a musician and mother of three who lives with hearing loss and tinnitus.

“I wonder how much longer it will be until I can’t hear music—and my children,” she says.

Thanks to you, researchers continue to make progress to alleviate Sonya’s biggest fear. Your generosity sustains this life-changing work performed by the Hearing Restoration Project (HRP).

The HRP’s objective is to regenerate, or regrow cells in the human ear — and cure human hearing loss and tinnitus.

To accelerate this research, Hearing Health Foundation (HHF) is launching our second annual HRP campaign, Operation Regrow, from June 17 to 27.

On June 17, check your inbox for an email from HHF with information about how to support Operation Regrow.

Thank you for being part of this critical movement.


Margo Amgott
Hearing Health Foundation

P.S. I am honored to introduce HHF’s new CEO, Timothy Higdon, to you. Living with noise-induced , Timothy shares your wish for better treatments and cures, and before Operation Regrow begins, I invite you to learn more about him.


Hello! I am looking for participants for research involving Alzheimer’s Disease in those with Down Syndrome, please reply if you are interested.

We have constructed a survey with 83 questions regarding general health, family history, education, socialization, and physical activity history of the individual with Down Syndrome, followed by The Lawton Instrumental Activities of Daily Living Scale and the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities. The survey is available online through Survey Monkey and intended to be completed by a parent or caregiver of the adult with Down Syndrome.The individual with for which we are collecting information must be over 18 years old. #AlzheimersDisease #ChildhoodAlzheimers #DownSyndrome #MedicalResearch