Genetic Disease, Porphyria (Also known as the Vampire Disease)

[IndigoCat17]

Porphyria Is Only Called Vampire Disease Because It Burns Your Skin

But There Is A Real Disease Where You Need To Drink Blood To Maintain

Good Health And You Have Sensitive Skin To Sunlight And Also A Bunch

Of Strange Things Which Makes It Seem Like Not A Disease And They

Are Actually Not Human Though Are Mortal Beings.

[Medewtysenu]

sunguardsunprotection(dot)com/­index(dot)php can be bought online or in Walmart in Arizona, Florida, Texas and California. about $2 per box, lasts for 20 washings. The also have a facebook page.

[Medewtysenu]

I have Acute Intermittent Poyphyria. Adjusting my schedule to only be out after sundown has helped, plus keeping all windows in my home covered with heavy light-blocking drapes, wearing sunscreen if I have to go out, dark glasses (for eye protection), wearing a hat, no shorts or short-sleeved shirts and washing my clothes with SunGuard laundry detergent (adds UV protection to clothing). Plus above all else, educating others.

[melomelomah]

@Medewtysenu Although life can be tough, please do stay positive because metal health is also important for you(:

It's okay to be different, the people who really love you won't mind about all these

DON'T LOSE FAITH IN YOURSELF :'D <3

[SauravAppleviper]

My brother Died because of porphyria 24 hours a go he was 19 years old :(

[melomelomah]

@SauravAppleviper I'm so sorry to hear this ):

But I'm sure that he was a great brother and he will always be up there to watch over you :')

Be sure that you're not alone :D <3 x

[ThePorphyrian]

Thank you for giving those of us with porphyria a voice. This disease is so very rare that I feel alone most of the time. It feels good to know that I am not.

[melomelomah]

@ThePorphyrian I hope that this video can gives more people attention to it too! Please do me a favour and share this video out so that more people can know about this :) <3

[themainman2008]

@TheForgeUndergound I've never heard of doing a blood transfusion I wouldn't go along with that

[TheForgeUndergound]

I was just diagnosed with porphyria, and I am most my doctors 1st case. I have been misdiagnosed for what seems like forever but now we are one step in the right direction. I don't get much sleep at night and my pain wakes me from a dead sleep, along with vomiting. I was wondering if anyone with this disease, has had blood transfusion therapy, and if it has helped them? Thanks so much, and those that have this awful disease, I know how you feel! P.S, this mostly affects my immune system and sto

[TheForgeUndergound]

I was just diagnosed with this, and I have been misdiagnosed for about 13 months. I was just wondering, because I am about to get this, does blood infusion therapy help? Thanks in advance. Also, everytime I get an IV with glucose it makes me feel better. If anyone else has this, I know how you feel.

[melomelomah]

@TheForgeUndergound You'r not alone! Please know that there will always be people next to you and for you :'D <3

[themainman2008]

ive got epp but i dont know where to start to talk about it, im up all night sleep all day, summer time comes, summer time go's

i feel sorry for all yous that walk in my shoes.. you feel my pain as i feel yours

steve

[32sona]

Besides, I've read stories of people who have lost their loved ones to this disease and I'm terribly sorry for them. It all makes me feel that I have it the easy way. My condolences to anyone who has lost someone, and to all those who're still battling: HANG IN THERE :)

[melomelomah]

@32sona Thankyou so much for all these encouraging comments :') I wish you a fantastic life and please give my blessings to everyone you know that has this unfortunate disease <3

[melomelomah]

@32sona Thankyou so much for your comment, it really gives me tears in the corner of my eyes, I hope that you can live a brilliant life and HANG IN THERE just like you've said, please stay positive, I really think that this will help :') <3

[32sona]

I was diagnosed when I was 12 years old - or 13, I'm sorry my memories are fuzzy. I'm 17 now. I got consistent attacks for about two years, and was in and out of the hospital. But then they stopped. However, I've started getting the attacks again since the past two years. They're not really traumatic or anything, just painful - but nothing pain medications can't treat. When I first found out, I thought it only existed in my family. Haha. My mom had it, and her siblings had it too.

[moonbearwolf]

"PORPHYRIA AWARENESS" WE ARE NOT FREAKS )":

THANK YOU FOR PUTTING THIS TOGETHER XOXO

[melomelomah]

@moonbearwolf Thankyou so much <3 That means a lot to me and I truly hope that you will have a beautiful live! Stay optimistic! Remember that there will always people that understands and care for you <3 :D

[Haligonia]

I was born with this (AIP), it runs through my father's side of the family, my brother is also affected. The three of us have all had minor bouts from time to time, but nothing we can't handle. What brought me here is the fact that I am the first of the three of us to have a daughter.... I've heard that it is very rare to pass along to females, but being a first time dad... I am a little anxious... any thoughts?

[melomelomah]

@Haligonia I think you should be optimistic and enjoy the time preparing for your lovely daughter. Let's wish that your daughter is going to be a healthy and wonderful girl. Also I truly hope that your daughter is going to be a great girl! I hope that you all will have fantastic times together!!! :D

[WrathShroom835]

It was brilliantly writen. So much so that it jerk a few tears from my eyes.

I have been wanting to find out about it for a while now and you gave me all the information I needed.

Thank You.

[melomelomah]

@WrathShroom835 Thankyou :D That really encourages me, I hope that this video helps you in knowing about this tragic disease :')

[SuperEvilArtist]

I honestly hope that anyone who has Porphyria realises that in no way does this make you a Vampire. It is only "called" the vampire disease because Bram Stoker used many of Porphyria's symptmatologies such as adversion to sunlight, garlic, the epileptic form seizures etc to explain the fictional character Dracula's odd characteristic's.

[zerdda]

sensitive and well done. Thanks.

[melomelomah]

@zerdda Thank you :) I hope the information helps you! :D

[melomelomah]

@zerdda Thankyou so much (': I hope that you can share this out so that more people can know about this disease! :D

[SuperEvilArtist]

It was Dr. David Dolphin that called porphyria the Vampires Disease. This connection that he made ruined many peoples lives in the 80s. This is a good video though.

[melomelomah]

@SuperEvilArtist Thank you :) And thanks for the information you gave :D

[melomelomah]

@LillithDarkwraith I'm very sorry to hear that :(

But I wish you all the best, hope that you will meet new friends everyday and also, I will pray for you for a fabulous and wonderful life :) <3

[melomelomah]

@LillithDarkwraith I'm very glad that you liked it, hope that the information inside helped you :)