Hi my fellow bloggers and readers- this is me, Penelope coming at you with a new blog post. I regretfully have neglected my porphyria blog for far too long and it's past time to make a new post for my readers- so here goes-there is some exciting news coming up in the porphyria world, as some of you may already know who read my last post on the "race to the cure" you might be curious about an update- which I will post one soon so keep checking back, I welcome return readers- favorite my blog for updates so you can easily return for aip cure posts.
The last time I worked on this blog honestly I just did some editing and cleaned it up so it would be more enjoyable for my readers. I made a blog post a while back about heavy metals and porphyria because I thought it was a very relevant topic- if you haven't read it yet I highly suggest you check it out, it's a very short read as I try to keep all my posts not too long.
Here's the latest on me- I am 34 yrs old now, I was 30 when I began this blog and very very ill from a very severe porphyria attack, I wanted to share my story with the world in case I could help just one person out there. I had one of the highest porphyria precursor counts in history and still lived. For years we have been trying to lower my too high precursor count and control my debilitating attacks, if your reading this and are not familiar with what porphyria attacks are and do not know my story, my whole porphyria diagnosis to treatment story is on this blog, just scroll down and you'll find it, it's my longest blog post titled my porphyria story. It will give you a better idea of what aip is, how dangerous porphyria attacks are, etc. Attacks can be life threatening and can lead to needing a liver transplant, interestingly enough a liver transplant will also cure aip, recently a very brave American young woman recently had the major liver transplant surgery to stop from having porphyria attacks. She said the liver transplant surgery was so painful she almost regretted having the transplant afterwards but eventually she felt better and now she has no more aip attacks- she is essentially cured!! She is a very brave girl, most porphyrics are not willing to go through the risk of having a major liver transplant surgery just for a cure for aip attacks. There is also the risk of a new donated liver not taking, and then to be blunt- your pretty much screwed unless you can find another liver in a hurry, which is almost impossible, and yes rejection of donated organs does happen- so there is a risk involved, it's not just about braving the pain. Some of us porphs may not have a choice in the long run, after having years of attacks sometimes we are forced to have a liver transplant because our own liver has been so damaged from these aip attacks and toxic porphyria precursors. That's the options us severe porphs are faced with, it's not much choice, but hopefully that will change in my lifetime- more to come on this topic later.
Now for an update on my life-
Well I'm still alive- for those of you who are wondering- lol, no just kidding, anyway(if you can't joke about life and death right) . The real skinny is that I am actually doing somewhat better but I am still having aip attacks at times of stress and sadly I still suffer from severe aip symptoms like nerve damage and I am still pretty much bedridden every day because of it, the internet is pretty much my connection to the outer world. I have a care worker who helps me accomplish things around the house and runs errands for me and my mom helps me a lot too, although she was diagnosed with MS not too long ago, which saddens me greatly. I have been getting up and walking more around the house, but I still need my wheelchair for shopping, etc. So I am really counting on this gene therapy cure that's suppose to be coming for severe aip patients like me. Once I have the gene therapy I see having more of a normal life again, maybe even going back to work again one day or college.
I have been cleaning more and being more active than I use to be, my count has come down some but it is still at attack range, which is 10x-20x normal range, normal range is 2.4 for PBG's. Mom got me two dwarf bunnies to cheer mt up, that I have managed- despite my illness- to take care of them very well. I clean their cages and everything. I also love making jewelry, so I keep myself from getting depressed. I've never thankfully been a person who suffered from depression- though most ppl would not be able to live my life without being depressed- most ppl would not be able to live my life at all- but yet I find happiness every day and usually laugh everyday, sometimes I cry too, but I am always hopeful for my future and with this new cure coming sometimes I even talk about what I'll do if I get my life back. I always say that no matter how hard my life is- someone out there always has it worse. Like Joe Dirt says "You gotta keep on keeping on" right on, have a blessed day and remember to count your blessings- not your unblessings. :)
The last time I worked on this blog honestly I just did some editing and cleaned it up so it would be more enjoyable for my readers. I made a blog post a while back about heavy metals and porphyria because I thought it was a very relevant topic- if you haven't read it yet I highly suggest you check it out, it's a very short read as I try to keep all my posts not too long.
Here's the latest on me- I am 34 yrs old now, I was 30 when I began this blog and very very ill from a very severe porphyria attack, I wanted to share my story with the world in case I could help just one person out there. I had one of the highest porphyria precursor counts in history and still lived. For years we have been trying to lower my too high precursor count and control my debilitating attacks, if your reading this and are not familiar with what porphyria attacks are and do not know my story, my whole porphyria diagnosis to treatment story is on this blog, just scroll down and you'll find it, it's my longest blog post titled my porphyria story. It will give you a better idea of what aip is, how dangerous porphyria attacks are, etc. Attacks can be life threatening and can lead to needing a liver transplant, interestingly enough a liver transplant will also cure aip, recently a very brave American young woman recently had the major liver transplant surgery to stop from having porphyria attacks. She said the liver transplant surgery was so painful she almost regretted having the transplant afterwards but eventually she felt better and now she has no more aip attacks- she is essentially cured!! She is a very brave girl, most porphyrics are not willing to go through the risk of having a major liver transplant surgery just for a cure for aip attacks. There is also the risk of a new donated liver not taking, and then to be blunt- your pretty much screwed unless you can find another liver in a hurry, which is almost impossible, and yes rejection of donated organs does happen- so there is a risk involved, it's not just about braving the pain. Some of us porphs may not have a choice in the long run, after having years of attacks sometimes we are forced to have a liver transplant because our own liver has been so damaged from these aip attacks and toxic porphyria precursors. That's the options us severe porphs are faced with, it's not much choice, but hopefully that will change in my lifetime- more to come on this topic later.
Now for an update on my life-
Well I'm still alive- for those of you who are wondering- lol, no just kidding, anyway(if you can't joke about life and death right) . The real skinny is that I am actually doing somewhat better but I am still having aip attacks at times of stress and sadly I still suffer from severe aip symptoms like nerve damage and I am still pretty much bedridden every day because of it, the internet is pretty much my connection to the outer world. I have a care worker who helps me accomplish things around the house and runs errands for me and my mom helps me a lot too, although she was diagnosed with MS not too long ago, which saddens me greatly. I have been getting up and walking more around the house, but I still need my wheelchair for shopping, etc. So I am really counting on this gene therapy cure that's suppose to be coming for severe aip patients like me. Once I have the gene therapy I see having more of a normal life again, maybe even going back to work again one day or college.
I have been cleaning more and being more active than I use to be, my count has come down some but it is still at attack range, which is 10x-20x normal range, normal range is 2.4 for PBG's. Mom got me two dwarf bunnies to cheer mt up, that I have managed- despite my illness- to take care of them very well. I clean their cages and everything. I also love making jewelry, so I keep myself from getting depressed. I've never thankfully been a person who suffered from depression- though most ppl would not be able to live my life without being depressed- most ppl would not be able to live my life at all- but yet I find happiness every day and usually laugh everyday, sometimes I cry too, but I am always hopeful for my future and with this new cure coming sometimes I even talk about what I'll do if I get my life back. I always say that no matter how hard my life is- someone out there always has it worse. Like Joe Dirt says "You gotta keep on keeping on" right on, have a blessed day and remember to count your blessings- not your unblessings. :)
2 comments:
Natural Herbs Clinic is a useful source of Treatment for Porphyria information, Porphyria Herbal Remedy is one of the best herbal remedies which use for the treatment of Porphyria. It treat the disease with out any side effects. Because it made with herbal ingredients.
AIP sufferer here, the above comment is the worst advice for any correctly diagnosed sufferer. Many "natural" "herbs" are contradictory to our ailment. Personally, prior to diagnosis, I tried many natural remedies for my ailments due to a late in life diagnosis (42), many of them made my symptoms much worse and often brought on new symptoms.
REMEMBER, there is no cure...don't let anybody bring you into a life threatening attack.
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