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Chemical and toxin sensitivies

MamaGould Message
11 Jan 2011, 03:40 AM

Writing a book on family member's battle with AIP (Acute Intermittment Porphyria) and recurring attacks potentially based on chronic exposure to low level (indoor and outdoor). Interested in learning more about acute porphyria patients' reaction(s) to chemicals and toxins. If you would be willing to share experience(s), please contact us.
bscdon Message
18 Jan 2011, 06:13 PM

Hi - It has often been difficult for me to associate a substance that causes an AIP attack because, for me, very rarely does an adverse reaction happen immediately after exposure. Usually by the time that I am very symptomatic a day or two has passed since the suspected exposure. Still having said that - I cannot be around some chemical substances without having an almost immediate reaction. I am responding to your inquiry because I was reminded once again last night that anything with acetone (my wife's application of nail polish / remover) will send me into a “porphy” state. I.e. belly pain, dizzy, numbness in my extremities… dc
MamaGould Message
18 Jan 2011, 08:55 PM

Thanks so much for responding; my daughter (now 14) began exhibiting symptoms at age 10; diagnosed at 12 with AIP. FInallly diagnosed thru DNA testing (she's adopted). As of this time she cannot return to local schools and is currently being tutored (through school district). Though I have yet to prove it, something in the school buildings cause symptoms: first (at age 11) nausea, headache, vomiting, dizzy, numbness which quickly progressed to 2-5 min. fainting & 'seizure' type activity which then progressed to 5-20+ min. attacks of fainting and convulsions and potential life-threatening actvity (inability to breath) before the horrendous abdominal pain came on (usually upon regaining consiousness). LOTS of hospitalizations and 'nasty' references about 'faking it for attention.' I narrowed it down to a combination of the cleaning agent/white & smart board markers/ herbicide before the school shut down and refused to work with me. Her nausea would begin whenever she had to wait out on the sidewalk for any length of time in front of the school building to gain entry with the other kids. The white and smart board markers contain neurotoxins; she was must susceptible in math class (one of the classes she loved) where markers were used very heavily. Finally, the cleaning agent (a "green cleaner") seemed to trigger attacks, especially during the 'swine flu' scare when everything was washed over-frequently. We resorted to retaining legal help to get her the education opportunity she is entitled to. Would you be willing to correspond about your AIP expereince(s) for potential input to our book (esp. if you have any childhood health/AIP-related recollections (trying to raise awareness of this rare disorder and to tell the story of our tween's ordeal with this adult-onset disease? If so, you can email me at FYI, a member to this forum helped us TREMENDOUSLY with a referral to an AIP specialist in your 'neck of the country' who literally saved our daugther's life and gave her/us hope for her future. In fact, we went to VA in October for an update 'check-in'. Our daughter is currently asymptomatic but hasn't seen the inside of a school room yet this year. She is about to start at a new school in another district and we are praying that this school will not trigger attacks. Our book is about 75% finished; to our knowledge, she is the only kid in U.S. with AIP that requires Panhematin treatments (she has a port in her chest to facilitate infusions) and can no longer play contact sports (her budding basketball love went kaput soon after she began the horrid attacks).
bscdon Message
18 Jan 2011, 11:08 PM

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