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Promote National Porphyria Awareness Week: April , 16-23 , 2011

Lifting and carrying my daughter was also often difficult for me. Peculiarly, I only had trouble picking her up when my undiagnosed malady was inanactive state. Lelia was not a heavy child, but she was still more than I could handle without feeling overloaded. During my ill periods, myarms felt like lead pipes; heavy and stiff. My wrists ached with the slightest movement, and my hands were extremelyweak and lacked dexterity. To halt atrophy developing in my muscles, I worked on maintaining my strength byexercising each day even if I had to move my legs and arms in the bed. Sustaining my health for the long term was often overwhelming, but I tried to continue my efforts even if I only could manage to do a few minutes of exercise each day.
On the otherhand, I could be amazingly strong during my intermittent well periods. Being able to move furniture around the house some weeks and having difficulty lifting my child at other times, made no sense to anyone, including me. It was clear that during my episodes of abdominal pain and weakness, I lacked the stamina of a normal woman my age, but when the symptoms lifted, I was astonishingly strong and pain-free. Nothing physical made sense ...
When Lelia was almost two years old, I became pregnant with twins. The pregnancy was uneventful during the first three months. Then the elusive illness crept back into my life again. I could not explain why, but I instinctively knew that the illness was somehow related to my pregnancy. What made it stranger still was that some weeks were symptom-free and others were unimaginably tough. During those periods, breathing was difficult, walking was difficult; cooking was difficult; reading was difficult; mothering was difficult; absolutely everything was difficult. Since sleeping was the only easy activity in my life, I yearned for peaceful, uninterrupted sleep.
Sadly, the twins only lived a few days.At that point,I was convinced that whatever was wrong with me physically had a great deal to do with their passing.
As before, theillness disappeared as unexpectedly as it arrived and returned again with acruel blow. Even though the pattern wasconfusing, I was beginning to make some valid connections between my health, mydiet and my menses, however, my physicians were unwilling to listen to my observations. Although their irresponsiveness was frustrating, I could not blame them. Absolutely nothing out of the ordinary wasever viewed on a regular urine or blood test. Also, with one exception, my physicians at that time were excellent,compassionate doctors, who were baffled by a rare, elusive illness.
Before I continue, I think it is important to note here that I had not been diagnosed yet with Porphyria, and also, my situation was not necessarily the same as other women who suffer from one of the acute Porphyrias. Some women fare very well during their pregnancies and deliver healthy babies, while others experience difficult, even life-threatening problems. Unfortunately, it is impossible to predict which women will experience Porphyria attacks when they are pregnant and which ones will not. However, some Porphyria specialists feel that women with one of the acute Porphyrias are thought to be at twice the risk of an attack when they are pregnant.
Shortly after the tragedy with the twins, I was hospitalized again with excruciating abdominal pain. I did not lie in my hospital bed quietly and suffer in silence. I literally thrashed in the bed night and day, trying desperately to position my body in such a way that the pain would decrease, but there was no such position. The pain pills I was given did not work either. In fact, I felt that the varied combinations of medicines I had been prescribed only made my pain exponentially worse with each pill,so with that justification on my tongue, I boldly refused to take what the doctors offered me. That sort of defiance did not endear me to them and even made our already shaky relationship worse. I was not the kind of complaining woman who thinks I won’t get good medical care unless I am the “squeaky wheel.” Rather, I had a resolve in my spirit and escalating pain in my body as evidence to back up my intuition that the drugs were killing me.
Unbeknownst to me at the time, my refusal of the medications turned out to be a lifesaving measure, as some of them were unsafe for Porphyria. I am not suggesting that people refuse to take specific prescriptions; rather I am suggesting that Porphyria patients mustbe careful and have their doctors check that the medicines they are prescribingare safe to use. My problem was compounded by the fact my doctors had not yet diagnosed my Porphyria.
It is very essential to find a doctor who is willing to see you to a diagnosis. It is also important for you to lean what you need to do receive a correct diagnosis.The tests are listed on the APF website. Had I had this list, I would have saved myself ten lost years without a diagnosis.


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GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…