Do you, or any of your family, suffer from any long term/life limiting illness? Great website!

in #life8 years ago (edited)

Do you, or any of your family, suffer from any long term/life limiting illness?

enter image description here

Heads Up

Do you want to know the best resource for helping you through?

My condition is ALS. Diagnosed this year my life expectancy is 2 years. Up until stumbling upon this great website I have spent hours and hours trying to establish what medications or supplements might help my condition and trying to evaluate proven and anecdotal evidence.

I have found my best resource and my share is:

PatientsLikeMe(www.patientslikeme.com)

PatientsLikeMe (PLM) is a worldwide website resource where people undergoing a huge range of medical conditions can:

  • Monitor their own and their cohorts emotional and physical wellbeing
  • Gain insight into medications and supplements used by cohorts and
    their effectiveness
  • Share medical histories
  • Find out about breaking research and clinical trials Gain emotional
    support and friendship
  • Forums for discussion and support
  • Currently sharing the records of some 500,000 patients worldwide

PLM appears to have all the information I seek in one place. The searchable case histories draw from a huge range of illnesses. I can easily connect with patients like me to:

  • Find out what prescribed medicines, self medications or supplements
    are helping cohorts
  • Partner with researchers, doctors, and companies to widen the
    understanding of my disease
  • Help put patients at the centre of treatment

The website has encouraged me to enter the details of my ongoing emotional and physical wellbeing so that I can track it and likewise I can track others and they can track me. This has given me a great sense of control and understanding, and best of all I can see that many sufferers of my condition have good quality of life and are surviving much longer than their prognosis.

Dear Steemite. You likely have someone near and dear who would benefit as I do from this great resource.

Please e-mail them the message you are reading - Right Now

Then give me some love :-)


Below is a list of the main conditions covered

Cancer
Breast Lung Liver Testicular Prostate Pancreatic CLL (Chronic Lymphocytic Leukemia) Non-Hodgkin's Lymphoma Thyroid
Developmental and Chromosomal
Tay-Sachs Autism Spectrum Down Syndrome
Digestive and Intestinal
Crohn's Disease IBS Ulcerative Colitis
Endocrine
Diabetes: Type I Type II Hypothyroidism Hyperthyroidism
Eye, Ear, Nose and Throat
Hearing Loss Glaucoma Macular Degeneration
Heart, Blood and Circulatory
Coronary Artery Disease Hypertension Iron Deficiency Anemia Raynaud's Syndrome Congestive Heart Failure Cardiomyopathy Aplastic Anemia
Immune, Inflammatory and Infections
Rheumatoid Arthritis Lupus HIV Lyme Disease AIDS
Kidneys and Urinary
Polycystic Kidney Disease Chronic Kidney Disease Interstitial Cystitis
Liver, Pancreas and Gallbladder
Hepatitis C Pancreatitis Polycystic Liver Disease
Lungs and Respiratory
Pulmonary Fibrosis Asthma COPD Cystic Fibrosis Emphysema Pulmonary Hypertension
Men's Health
Infertility Erectile Dysfunction Benign Prostatic Hypertrophy
Mental Health and Behavior
Depression Bipolar I Bipolar II Social Anxiety ADHD/ADD Dysthymia Generalized Anxiety Disorder Panic Disorder Eating Disorder OCD Phobia PTSD Schizophrenia Drug Addiction Tobacco Addiction Alcohol Addiction
Metabolism and Nutrition
Hypercholesterolemia Hemochromatosis Obesity
Muscle, Bone and Joint
Fibromyalgia OA Osteoporosis TMJ Muscular Dystrophy
Neurological and Brain
ALS MS PD Epilepsy RLS CFS MSA NMO PLS PSP CBD Stroke Migraine
Skin, Hair and Nails
Psoriasis Eczema Rosacea
Transplants
Heart Transplant Kidney Transplant Liver Transplant Lung Transplant Pancreas Transplant
Women's Health and Pregnancy
Infertility Endometriosis Menopause PCOS Postpartum Depression

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Dear Steemite..If you think this post deserves wider sharing please think about lending it some promotion.

I just put 1SBD on it, because I think after this idiotic flagging the comment feed should be seen by more people.

Much appreciated..Thank you.It seems my post is dead in the water as is not visible to the community

Seems it is visible now..Thanks all for your support

I have a lifelong condition as well, and it includes symptoms of digestive dysfunction, cognitive impairments, and the stigma of 'drug abuse' - simply because it so happens certain people profit from not helping people like me on the margins. Upvoted and don't let the flaggers get you down. Maybe I should even invent a word for people who take pleasure (and non-monetary profit) out of flagging posts. Flaggots. And I mean that as caustically as it has become a term of insult amongst anti-nationalist anarchists, towards people who worship flags.

On the other hand, you can help by making a hashtag to help cluster posts about these subjects. I have an interest in participating in discussions about these subjects myself.

Many thanks for the support..My blood is boiling!

Don't worry too much about it. It is clear and perhaps it is about time that some asshole showed up with a lot of money to run a bot to autoflag posts like this. Finally the community will see how unproductive flags are and maybe we will see them taken out of the protocol.

POST/ IMAGES HIDDEN DUE TO LOW RATINGS!!!
DOWNVOTED BY SOME CLOWN @HIGHASFUCK
Looks like highasfuck hasn't started blogging yet!
THANKS

This individual is running a bot that they have built to flag people. The flaggot doing this is gonna get a come-uppance sooner or later. Or at least, they are going to prove my argument that flagging is not beneficial to the platform.

This kind of stuff needs dealing with asap. I just don't get people :/

kin flaggot!

Shit..This dude has 10,822.886 STEEM. Hasn't blogged, hasn't commented! WTF?

Wonder what happens if I re-write the same article?

there is many who invested big, based on their self opinion of their curating abilities. one of them is in a slow-motion-burn. Because this asshole has no taste, actually.