Try, try, and try: my porphyria fight | Sue Burell

Try, try, and try: my porphyria fight | Sue Burell | TEDxUniversityofEastAnglia

Рет қаралды 13,296

6 жыл бұрын

Living with Acute Intermittent Porphyria, Sue is much more than her chronic illness. Her positive ‘can-do’ attitude is not only a self-motivator, but also inspires those around her. Tune into her talk delivered at TEDxUniversityofEastAnglia to get a glimpse into what it is to live with a chronic disease.
Living with Acute Intermittent Porphyria, Sue is much more than her chronic illness. Her positive ‘can-do’ attitude is not only a self motivator, but also inspires those around her. She works closely with the British Porphyria Association, and finds fulfillment in giving back to society. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx

Пікірлер: 45

@fylgjafolk6803 3 жыл бұрын

I have been sick since January and it has been debilitating, after having my heart beat out of my chest, potassium and electrolytes dipping and bottoming out, abdominal pain/back pain that feels like knives or something is rotting inside me, high blood pressure, dizzy, super fatigued, and so much more. My endocrinologist actually has me going through testing for this and at this point with countless CT scans not finding anything and every test you could imagine, I’m almost certain this is what’s going on.

@kaylabryson1932 2 жыл бұрын

You are an amazingly strong and wonderful person . I am sick tonight in a bad flare and found your talk inspirational

@LAXESU96 4 жыл бұрын

My daughter has EPP - thank you for sharing your voice!

@onemanarmy8508 4 жыл бұрын

My girlfriend may have this. She has all the symptoms and it's very hard seeing her like this. I met her after she was diagnosed as having Gillian Barre syndrome. However her Dr. Thinks she may have this. Any advice on how to make her comfortable or how to deal would really help. I love her so much and it tears my heart that she has to deal with this. Thanks

@alleenepeterson4185

I have AIP. I almost died after giving birth to both of my sons (5 years apart). My first husband and second husband couldn’t handle the stress that it created and they left. It wasn’t until after that, that the Pan Hematin treatment was discovered. It helped me tremendously. That was 16 years ago and I have had to navigate this disease alone, with 2 children, while medical professionals didn’t seem to believe me or take me seriously. My sons are adults now and are my greatest joy in life. I have very few symptoms of the porphyria now, and they are tolerable.

@rachelharville9817 Жыл бұрын

I have been sick my whole life. I had SEVERE nosebleeds at night as a child and the dr's burnt my vessels. My mother was diagnosed with an "extremely rare heme disorder" the dr didn't even give it a name in the early 90's. I have had my appendix out, my gallbladder out, most of my stomach out, more of my stomach out and some of my intestines. I have been on the strongest opioids that pharma makes. My spleen hurts, my liver hurts and I vomit every day. I am 45 years old. I LITERALLY just found out by accident that I have one of the porphyria's this week. I am going for testing/genetic testing next month. My whole family is sick and honestly i just made this comment to say that I do not believe this group of 8 types of porphyria's are as rare as we have been told!!! This month is RARE disease month and there are dna companies doing sales on whole dna sequencing! Take advantage.

@gracehk5944 3 жыл бұрын

I have AIP and thank you so much for sharing x

@jackmeloff7176 5 жыл бұрын

I tested positive for AIp.porphyria..and it is a fing nightmare..!!! I wish you the best..!!!

@lelife1593 5 жыл бұрын

I have it too thank you!

@soniamoraleschemistry 3 жыл бұрын

I was diagnosed with hepatic porphyria 25 years ago, triggered by exposure to high levels of formaldehyde gas. Thankfully I was cured of the disease in Mexico because several medical professionals in the US do not know how to cure it. Mexico is the place to go. I had the pain consistently too but no longer. Did not work for two years only and was cured.

@shivymcd 3 жыл бұрын

I wish we could get help with a diagnosis for my 15 year old daughter! she has been so ill since January. awaiting appointment from ninewells as we live in Scotland.

@JB-Hae

I have porphyria. Just diagnosed at 64 years old. I’m not going to tell my awful story but I have a question. If knowing you have this disease why would you get pregnant ! That baffles me. You are giving your daughter a crippling painful life ahead. When you could adopt. This I can’t get behind.

@gizmogurlie41786 Жыл бұрын

Im in testing right now to find out if i have this and im terrified

@itisfinishednowtimetoclean2723 2 жыл бұрын

Thank You for this amazing presentation. My Rheumatologist thought I might have this, he tested me no positive Results, fast forward many years and now I’ve got far more severe symptoms including occasional red and cola colored urine. Working towards seeing a porphyria specialist as I’ve now got severe neurological issues…. Here’s To HOPE! Thank You!

@jenniferkovach9997 4 жыл бұрын

I’ve got it, my mother had it, I’m 62 now and it’s been a nightmare!

@greenjuicegirly 3 жыл бұрын

Hello they think I may have porphyria but one that affects the skin and stomach etc I am doing tests for it I want to do a genetic test just in case im not in a flare and it is missed does anyone know a good genetic test I am in so much pain? xx