Petition for a Cure!!

Please help by signing this petition for congress to support more research for Porphyria and other genetic diseases. Time to find a cure! The time is now! Who else besides me is sick and tired of waiting around for other people to do something about our illness? It's time to stand and say we want a cure! Please do more genetic testing, more scientific research to help us find a cure. If your with me please sign. Thanks for your help!

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The Runner

Running far and fast, in her mind that is all she has.
To run far and fast, to get away from the demons of her past.
Running ever still, not stopping to catch a breath.
Her life has been a constant downhill. Filled with failure and not success.
No one could understand her pain, the disease she suffered from. 
The emotional pain she felt inside, that she so desperate tried to hide. 
But here she is at a breaking point. 
The demons in her life are gathered to overtake her.
So she runs far away from them, she runs to catch Jesus.
She feels if she can run fast and far enough God will catch her before she meets a ghastly end.
Save me she cries, so loud her voice but no words come out. 
Save me from this maddening hell I live in. Save me from the constant pain and death I feel. Save me from myself.
She runs, so fast and so far, running to get away from the broken heart, the diseased girl that didn't have any friends, the tortured soul that just wanted to be let in, the abandon child that prayed to live, a house divided can't stand. 
Run, run, far away, don't look back and you might be safe. 
In Jesus' arms I commit myself today, my hope and trust lies in him and my life will show that Jesus lives!!!!!!!

Porphyria: My Breaking Point

Sometimes life tends to be a bit messy. For me it is a constant threat. I try to be good, a Christian, and a light force for Christ Jesus. But so often I feel as if I failed. The disease that enthrones my body never lets me forget my failures, it constantly brings me to a place of pain and frustration, sadness, fear. It seems like I am always sick. Yesterday I went to the doctor and found out I have two different kinds of infection. I got a cortisone shot for the pain only to have an allergic reaction to it. I thought that I would end up in the emergency room like before when I had allergic reaction to medicines. But this reaction was quite different. As if a Porphyria attack such as sharp knives gauged at my stomach, then several hard places, like hard circles in my stomach, sides, back, and legs started throbbing as if they all had heart beats that were throbbing erratically and about to explode. The first thought that came to my mind was my grandfather's death and how he had blood clots all over his body when he died. My worst fear is dying like he died. But I know that his death doesn't mean that it would be mine. Otherwise God wouldn't have healed me when he did and saved me from death when I was younger when the disease tried to take my life. I know that I am here for a reason. So last night when I was sure I was going to need an emergency room, and I started sobbing and telling my mom she prayed for me. And through prayer God heard our cry and I started to feel better right away. I always forget that my mom is very sensitive to her father's death, not long after she started crying as well and I had to console her. Sometimes I try to keep stuff to myself that involves him because I know that it will upset her. But I needed her help at last, I needed someone to pray for me. And so did she need someone to pray for her. See we all need prayer, our worst fears will consume us without prayer, and our sickness will kill us without it. For me prayer and God is the only thing in this world that keeps me going. I would not be where I am today without God. I would not be alive today without God. God is what keeps me grounded. Otherwise the sickness would overcome me and I would not be able to go on. The sadness I feel with this sickness can be unbearable, the emotional turmoil, the physical pain that has been said is one of the worst painful diseases in the world, the battles to be fought are unbearable on your own. No, without Jesus Christ I could not overcome and would not be alive today. Last night I was reminded of the times God has healed me over and over again, saved me from death, brought me back from the dead, and kept me alive to tell his miracles and mercies another day.

 

Need a Cure

Hi all! I'm so not good. Well I'm ok now, but I had a horrible time with my period this time. Ok, so last week I kept feeling horrible and like I was going to start, I even got all week and dizzy in a store. And I kept spotting so I kept thinking I was starting, but never did. So finally Sunday night or Monday I think I started, but on Tuesday things got bad. I woke up with bad cramps. So I soaked in the tub thinking it would help. Then I barely got out of the tub threw my clothes on and had to lie down before I hit the ground!!! So I get in bed and everything hits. The horrible pain, cramps, feeling like I'm going to die cause the pain is so unbearable. Then I start sweating everywhere, like really bad, I do that on my period when it's really bad, I just sweat terrible. So I'm soaked in my sweat, pain everywhere, my dad comes in and I can barely talk and I'm like heating pad, so he gets me a heating pad and I'm laying there thinking a bunch of things, one is (since Porphyria is caused by excess Porphyrins in the body) I'm thinking it would be nice if they made a heating pad that took out any excess Porphyrins so I wouldn't have to go through this. And why can't they make a cure. I'm too young to die. Anyways, so things don't get better yet. I keep feeling like I'm going to throw up but I can't get up so when I do throw up guess what, I have to lean over the bed and throw up on the floor, cause there's no way I'm making it to the bathroom and back in one piece. So then I think I'm done and I throw up yet again and this time it's all yellow. Which kind of freaked me out cause I've never threw up yellow stuff before. But after throwing up yellow stuff twice I acutally felt a little better. Then my dad came in again, and I couldn't talk at all so I'm like pointing to the floor, so he goes and gets a towel and puts down on it and I thought he'd bring me a wet wash cloth for my face full of puke, but no, so I'm like pointing to my face so he's aggravated, but I can't help it I'm like praying for dear life here, so he gets me a wet wash cloth so I can wipe the throw up off my face. Then I start feeling better and fall asleep. Then a couple hours later I wake up and the worse is past, but now I'm like all freaked cause I hate having the bad bad bad periods, I thought those days were behind me, I thought I just had bad bad periods, not bad bad bad periods. And so now I'm really back into reading all about medical stuff which I barely understand but I need a cure so bad I don't know what to do. Uggggh. I feel like screaming! Doctors please find a cure. But don't worry I will keep on trying to figure one out myself!!

~Rachel ;)

How to Survive

How to survive a horrible Porphyria attack. This could go for any kind of painful attack or anything that would upset you, just basically how to survive. Lately I've been having really bad attacks, I start shaking uncontrollably and I get real scared and paranoid like. It's always at night right before I go to bed. It's as if I am breaking down or something. It gets worse, but who wants to know every detail?

How to Survive:

Steps 1-every one else....

PRAYER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That's right folks, when anything bad happens to me, severe anxiety attacks, horrific painful periods, horrific pains of any kind, life in general, anything that can and will go wrong. I stop and pray. I'm constantly praying in my mind. I believe it's what keeping me going and getting me through each and every day. It's what gives me strength to carry on. We can do all things through Christ. Remember that bible verse. There's a ton more too about God and how to be peaceful. Psalms 91 is a good one, I like Psalms, Psalms 91 and 139 are my favorite. I can pretty much quote them by heart. He that dewellth in the secret place of the most high shall abide under the shadow of the Almighty, I will say of the Lord he is my refuge......

Fusion

Infused by blood that's against me.
Tortured by pain that's inside me.
Bruised by others lack of understanding.
Stuck in a world that don't seem to care.
Trying to understand and make some sense of it all.
Falling through the cracks of my misunderstanding.
Wondering when this disease will be cured and quit plaguing me.

But knowing that God is always with me, and understanding that
He'll hold my hand and guide me.

I can carry on for Christ!!

So you all know I have this rare gentic blood disease. And being that, it can cause me a lot of pain. There are days where I think I'm going to die because the pain is just too much for me to bear, it's too much for anyone to bear. It's as if I'm being operated on alive, and there are sharp knives stabbing me all over my body. And I pray to God for mercy, and He always shows me mercy. But one thing that gets me through the pain and suffering I go through since my disease is one of the most painful diseases out there. When I'm being attacked by the pain I think Christ died on the cross for my sins, all are sins, if He can bear that much pain, more so than any human would ever have to bear, surely I can get through this. And Jesus by the mercy of God gets me through it. Cause I know that Christ beared a lot more pain than I'll ever have to. And He always has and always will see me through my hour of pains.

About Me and My Disease...

I have a Rare Genetic Blood Disease! It's called Porphyria, there are different types of Porphyria. I have CoProPorphyria. You can't catch it, unless your my child then you've got a 50% chance of getting it. I've been very sick my entire life. I used to be a lot sicker than what I am now, but by the Grace Of God I am alive and have made it this far. It's a long story about my sickness, so I won't bore you with details. But I'm only 26 and I've had this my entire life! I'm trying to cope with "growing" up and not being able to do normal things as other people my age. I don't have the energy I should to do the things I need. But with the help of God I make it through each day. At one point the disease was about to take my life, but God being merciful towards me saved me from death. Anyways, I am sick, and most of the time I'm in denial and don't like to admit it, but I am. I don't know what all there doing for cures, but I do know it is tough to find a cure or treatment for a blood disease. Because it's our blood, it's not like it's a virus you can kill, we need our blood to live and unless they can completely regenetize the blood, I'm not sure what can be done in way of a cure. There are treatments, but it for when it's beyond bad. I guess cause the treatment could be worse than the problems we have. Anyways, so aside from the fact I live with a smoker, (which doesn't help my porphyria out) and that I have a rare blood disease, the only other thing to know about me is I'd like to become a makeup artist and finish beauty school. I started, but all the chemicals (blood disease affected) made me sick and I had to take a break. If it's totally impossible for me to be around all the chemicals all day, I am going to get my journalism degree as I love to write and have all my life. Ok enough about me, just thank God that He still heals people today, I'm living proof of that, I have faith beyond reason, and I know that someday all these diseases everyone can get will all be ok.

I Am Blessed!

I am blessed! I was thinking on my illness and reading stories of other people with the same condition as me, and I truly am blessed! Sometimes it's hard not to feel sad or frustrated about having a rare condition, because it casues so many problems. But, for me when I was sick the most I turned to God. And I always turned to God, I still turn to God to this day. Doesn't matter what you believe about God, the fact is He healed me and He continues to heal me each day, it is a miracle I have made it this far, it is a miracle He healed me when I was my sickest and about to die, it is a miracle just to have life. Anyone whoever experienced a death experience knows not to take life forgranted, your blessed to be alive and any moment could be your last, so don't waste your time here on earth, or you may end up to regret it. But, I've come so far in the last few years, and God has contiuned to heal me over and over again. I am so blessed that I do not have the horrific symptoms I did 10 years ago, I am blessed God took them away, I am blessed I'm in mimanl pain compared to what I was before, I am blessed!! Have faith and you shall receive!

Finally a Cure???????????

Finally there is suppose to come a cure out in 2010 for Porphryia. While I don't know the full extent of this cure, what it is or how it works, or even if it's for all types of Porphyria, I am hopefull that maybe one day I will feel "normal" like the rest of the world?? I am always sepekial when stuff comes out. I want to wait a few months or so and see how other people do with these new found cures before I jump into the action. If something terribly goes wrong, I don't want to be the one it goes wrong on. Apparently they are testing it out now, for two years until they release it. So hopefully it will work as I'm praying for it to. If it does, I will be so relieved that maybe I will be pain free and not have so many Porphryia attacks. But what about the last 26 years of my life that is down the drain because of Porphyria? Who knows, I guess I just have to start from scracth and pray for a new life without Porphyria and without lots of doctor visits, hospital trips, pain medicine, horrific pain, etc. And maybe the rest of my life will fall into place, one can only hope and pray for that. I started crying the other day in church when the preacher said there would be a day that would be when Jesus would call us up to Heaven and change our mortal bodies to immortal bodies. And as he was saying this I suddenly realized that there would be no pain, no heart ache, no pain meds, no hospitals, I would be pain free. I can only hope and pray for such a day..................

My porphyria story - Sick Eyes

I have a rare blood disease called porphyria. There are eight different kinds of porphyria. I have one of the acute porphyrias called heredity coproporphyria. It starts in the blood with the heme and the heme makes porphyrins. People who have porphyria have too many porphyrins and that causes us extreme problems. I first had a porphryia attack after I started my periods. My periods was what brought on the disease. You can have porphryia and it lie dormant and you never experience symptoms until a trigger comes along. My trigger was my period. I use to have horrid periods where I would pass out and have sharp tingly knife pains all over my body, be dizzy, throw up, my blood pressure would drop really low and at times I was admitted to the hospital.It's hard to explain. But there is a lot of pain involved with porphyria. It causes stomach pain, back pain, side pains, just anywhere you can have pains from porphyria. And if you get something like the flu it will make the porphyria worse and it takes you longer to recover from it than normal people. Porphyria is a rare blood disease and needs to be addressed. Not very many people understand how porphyria works and how crippling it is. For me it's very frustrating. Because I have family and friends who do not understand what a struggle I go through on a daily basics. They wonder why I can't hold down a job, when I feel like crap and I'm throwing up my instentines. They wonder why I'm not normal when my blood produces too many porphyrins and my stomach hurts like a thousand stabbing knives. They wonder why I can't be on the fast track. I wonder why they can't understand my sickness why they can't see I'm trying my best. I try to go to school and I get sick and in the hospital. I try to work and I get sick and can't. It's very frustrating and annoying. I have no time for people who don't understand what I go through. And who critizes me over something I have no control over. I wished I could be normal and have a normal life, be graduated from college and have a job. But for me trying to get through each day is a challenge. The more I try it seems like the harder it becomes and I'm tired of people judging me. When I was a lot sicker than I am now, I had more attacks more often and I was really bad off. I always had faith that God could heal me. I prayed and prayed and went to the altar at church and the preachers prayed for me. And I know God has speared my life and let me live again. Well I kept going to church and being prayed for and one night while the preacher was praying for me I felt like an invisible hand reach down into my stomach and turn my insides around and make me whole. After that I stopped having as much problems as I was having. I stopped having the horrid periods I was having and I started gaining weight. I could never gain weight and I looked sick from the pictures I have of myself back then. I knew that God had heard my cry, and I knew that God had healed me. Well it wasn't the only time God healed me, He's healed me more than once. But anyways so for several years I got better, I was going to school and working part time. But then things got bad. God had healed me of death and healed me of my sickness.I thank God each day for healing me when He did. I just want people to know more about this rare disease and to understand how bad it can affect people. It's not easy living with something that is crippling and causes you to hold back on your life. While the world goes on around us were stuck sitting on the sidelines while the rest makes fun of us. If you had my disease you'd understand how I feel. Until the day that God completely rids me from this disease or calls me home I still have it. And want the world to know porphyria is no laughing matter.

Porphyria the unkown disease.

Porphyria is a rare disease that starts with your blood. There's a substance in your blood called heme that makes porphyrins, somehow porphyrins contribute to blood flow. People with too many porphyrins have porphyria. Porphyria causes a lot of different problems. There are eight different types of porphyria. The main ones are the acute porphyria's. In these porphyria's there is severe abdominal pain, I like to explain them as sharp stabbing knife pain, or like having an operation without the anstethia. It's not little stomach pain, it is at times intense unbearable pain. Then they have sensitivity to the sun. Something about the rays of the sun affects people with porphyria. I have porphyria myself and I know that when I'm out in the sun too long I start to feel strange and I can't think clearly and I start having the stomach pains. It brings on a whole new world of pain and sickness. Also there are mental side effects and nervous system affects. Such as worry, fear, and nervous side effects, like panic attacks. Thankfully I know a God who heals and has kept me sain throughout all these years. I use to get a horrible fearful feeling that would come on all of a sudden and I'd feel like the world was coming to an end or like I was going to die right then and I'd be hysterical. I'd wake my mom up at night and have her pray for me cause I was so hysterical. Also I have a lot of anxiety and panic attacks. I get real frustrated and start feeling all anxious and then I start hyperventilating and feeling hysterical. There are a long list of medicines that porphyria people have to stay away from. Also there is other triggers such as sun light, smoking, alcohol, and certain foods (which may be different in each person) that will cause attacks. Menstrual cycles for females will cause attacks. Mine were horrible. Right now my periods are all messed up and I don't have a period. But when I use to I would pass out, my blood pressure would drop really low, I would have horrible pains all over my body, Not a place in my body didn't hurt, I would throw up and be dizzy when concuss. It was horrible and on occasion I have been admitted to the hospital because of my periods and I passed out in the doctors office more than once. There's a lot of things that can go wrong with porphyria. Most people do not understand what it feels like or what people with porphyria goes through on a daily basics. It's difficult to see friends and family who live successful lives and don't understand our circumstances. When were trying our best but are shot down by our own blood making too many porphyrins and causing us to have horrid pain beyond description and panic effects. And they wonder why it's hard to hold down a job and rise to the top like all the other successful people do.

Living with Porphyria

Well I'm 26 years old and I've been dealing with a rare disease called Porphyria since my 7th grade year. My stomach hurts a lot. It's hard to put things into perspective when your seeing a thousand different possibility's for your life. It's like being in a crowded room and seeing no one. It's a horrid disease and I have a hard time coping with it. I pray and take it all to God, and if it wasn't for that I think I would truly be mad already by now. But this is a unique disease, it has to do with the blood and heme in our bodies, mine produces too many porphyrins aka leaving me with porphyria. I don't understand this disease. It's the worst. It's like an obssesion that you try so hard to push out but won't go away.