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Thoughts On Porphyria |
After reading over 50 clinical case histories, one can begin to understand why no two patients are alike, and why there is so much confusion among the doctors trying to make a dx because nothing is really concrete, and there are so many different signs and symptoms. In addition they manifest themselves differently. Even in the same patient, no two acute attacks are identical... there are minute differences on every single attack." "Because no one presents in the same way, and even the same person does not present in the same way each attack, it makes it extremely hard for the porphyria patient to know exactly when to present themselves to their primary care physician or to the Emergency Room for Intervention Therapy." "I say this because none of us present in the same way. I do not always present in the same way for every attack. For instance, if I waited for red urine I might have a long wait sometimes, because it is not always present. " "The ' constants' are the ab pain, nausea,and constipation, and,.....it would be nice if they would exit just once! But having just these symptoms without a porphyria dx could lead clinicians to a large field of other more well known dx." " If it is this hard and complex in identifying the simple and plain AIP, think how much harder it is to add the cutaneous elements, and then to define the hepatic from the other. Porphyria is a mystery to many clinicians. Most have heard of porphyria briefly in medical school, but the majority have not ever had a porphyria patient." "A quality, and accessible medical professional knowledgeable in porphyria is hard to fine. But if you have a primary care physician who is willing to work with you and learn along with you, you are undoubtedly blessed. " "Porphyrics need to remember that you may be the first and only porphyric your physician has treated. He/she may have 500 other patients with the more common diseases which need clinical time as well as you." " Most porphyrics in order to survive the disease become strong people and assertive. If we are to get the best medical care possible we have to undertake extensive research on our own and share everything we find with our primary care physician." " This disease does not come in a neat little prescription with set answers and diagnosis and treatment. We have to remember that there is only one of us and the clinician has a whole medical community to attend. Whatever we can do to help he/she in caring for us is for our own benefit and worth the effort." "Knowledge of self goes a long way in helping one's self to wellness." "Having someone who all ready knows you helps immensely in planning and executing emergency strategies for when you go into an acute attack, because we may not always find our primary on-call." "DNA however can not be refuted. My mutation mapping is an exact science and whether it be blood, hair, liver tissue or bone marrow...it is all the same and I am me, and I am either a porphyria gene carrier or I am not as defined by that DNA." Vincent Van Goh, a well known porphyric once wrote: "Love is something eternal-- the aspect may change, but not the essence." Kindness consists of loving people more than they deserve. This is especially true when caring for a porphyric. Be glad of life because it gives you the chance to love, to work, to play,even to look up at stars, but moreover to reach out to others with porphyria. --Based upon a quote by Henry VanDyke "Every day in a life fills the whole life with expectation and memory" Not every memory of porphyria need be negative. There are good points. --Based upon a quote from Sinclair Lewis "Fill your mind with happy and pure thoughts, with pleasant memories of the past, and reasonable hopes for the future/ This also applies to porphyria. You have made it thus far, why not have reasonable hopes for the future? --Based on the writings of John Lubbock "It isn't the big pleasures that count the most; it's making a great deal out of the little ones." A flower, a card, phone call or simple presence, makes all the difference during an acute attack. Be there for someone and they'll be there for you! --Based of the writing of Jean Webster Vincent Van Goh, a well known porphyric once wrote: "Love is something eternal-- the aspect may change,but not the essence." George Eliot once said, "What do we live for, if not to make the world less difficult for each other?" Help make life of another porphyric less dificult by sharing and giving of your time in a Support Group. Somewhere on the great earth the sun is always shining. And just so sure as you live, it will sometime shine on you. While many of us can not be in the sun because of our porphyria, may we still have many sunshine days at least in our hearts! When you come through the tunnel of testing, you will shine brighter because you will know beyond a doubt, and the truth will set us free! I expect to pass through life but once. If, therefore, there be any kindness I can show, or any good thing I can do for my brother or sister porphyrics, let me do it now, as I may not be able tomorrow. -Based on William Penn's sonnet The time to be happy is now! The place to be happy is here! Tomorrow may be another porph day, so the time is be happy is now. If you experience the Creator's love while at your lowest point, you will know it has nothing to do with your porph condition, and yet it has everything to do with that peace that comes from the Creator. Be faithful in little things, for in them our strength lies." When you come through the tunnel of testing, you will shine brighter because you will know beyond a doubt, and the truth will set us free! |
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