I’m 65, housebound, was diagnosed at age 40 with AIP but prior to that I had 4 autoimmune diseases including hashimotos, later it became graves which I was treated with RAI to shut down my thyroid, then graves orbitopathy which was treated with ten eye surgeries, also celiacs disease, horrible seasonal, chemical and food allergies. My immune system is very bad and I get cold sores, shingles and asthma and I can not tolerate vaccinations, most supplements and definitely not medications. I believe porphyria is at the root of all my health issues but I’ve never found treatment for it, I’m on Medicaid and cannot find any help 😢
My Hematologist reached out to a Porphyria Specialist and he never replied, I am one who is having to take a long trip. As my specialists are referring me out. Thank You all for your passion to help people suffering with this illness. I pray I find the correct diagnosis and hope to feel better soon, even to identify this unknown phantom. If I do get better, I will offer to educate others in my state, as much as my health allows. ❤
Thank you. I believe this is what I am dealing with. I am 66. I gave up on Sara before they killed me. I do extreme avoidance, and run damaged systems on manual. But still have 60-80 really horrific days.
I'm sorry to hear that. Please contact us at general@PorphyriaFoundation.org or call 866-APF-3635. We can send you a free doctor packet, recommend a doctor in your area and answer any questions you may have. We have supports groups and educational programs.
Wonderful lecture! Thank you for this seminar. This is the most thorough discussion of this topic that I’ve seen. It is very understandable and was well communicated. Thank you Dr. Smith, Presenters, & APF!
Can anybody tell me if the abdominal pain is spasmodic. I have a severely mentally and physically daughter who every few weeks.. sometimes goes into Spasms that lasts for hours..it's rhythmical 1 minute. Then 30 secs if spasm which gives her agony. Sometimes she will go for an hour or two in the morning then it goes off then comes back in the evening. She has no verbal communication and doctors are baffled and sadly not very helpful?
I have Bad Neuropathy, and it is movinv to my other leg. Cannot get a diagnosis where I live. Have all genes, Homozygous inheritance, pathological alleles., symptoms all symptoms adding up and No treatment, I think my Dr.s are not sure what to do, and I remain in pain. Hoping a referral will get me to TX to see a specialist I live in NM. So Frustrating.... IV helps profound gut attacks (liver mostly). Blood counts are crazy... red/brown urine, rashes, fury face, I won't go on... This has been a lifelong phantom. ALA comes in high but no high PBG=no DX!! UGH. My Rheumatologist suspecting this years ago. Wish he hadn't retired, He would likely have treated me, as he saw it. The attacks are Profoundly "fall in the floor", pass out kind of painful . Thank You, Dr. and APF! Bless You for saving lives.
Does 23 and me show the common mutations? I suspect genetic as both parents also had odd occasion hemolytic events that drs never figured out. And my mom died of liver cancer. I went to a site and down load testing hope to speak with dr. Soon to see if this might explain these periods of horrific pain.
23 and Me does not do gene sequencing, but we can provide a free DNA test that does gene sequencing specifically for porphyria. We can send a doctor packet to help and we also have educational programs and support groups.Please contact us at general@porphyriafoundation.org or 866-APF-3635.
I'm sorry to hear you're struggling. We are here to help! Please contact us at general@PorphyriaFoundation.org or call 866-APF-3635. We can send you a free doctor packet or recommend a doctor in your area and answer any questions you may have. We have support groups and educational programs.
❤ THANK YOU FOR COMMENTS NOBODY CAN EXPLAIN THAT FEELING IT SADDENS ME OUR MEDICAL PROFESSIONALS DONT CHOOSE TO SEE THE EVIDENCE..ITS NOT THAT COMPLICATED THE ISSUE HERE IS THEY WILL NOT MAKE ANY MONEY OFF OF OIT
Soy Ana Jiménez, de Bilbao españa, paciente de porfirias, con muchos problemas por parte de los sanitarios para un diagnóstico que es más que evidente, me diagnosticaron porfiria en 2017 y sin sentido,me quitaron el diagnóstico, quitándome la posibilidad de un tratamiento, mi hijo tiene sintomatologia también.esto no debería de pasar,pero por lo que puedo ver es un problema a nivel mundial, es una injusticia,lo único que hace esta situación es crearte una crisis tras otra.queria dejar constancia de mi situación y la de muchos pacientes, por desgracia. @Jiménezcorralesana
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We need more doctors like this man. Hats off to you doctor. Very informative 👏 👌
Dr. Smith is wonderful!
I’m 65, housebound, was diagnosed at age 40 with AIP but prior to that I had 4 autoimmune diseases including hashimotos, later it became graves which I was treated with RAI to shut down my thyroid, then graves orbitopathy which was treated with ten eye surgeries, also celiacs disease, horrible seasonal, chemical and food allergies. My immune system is very bad and I get cold sores, shingles and asthma and I can not tolerate vaccinations, most supplements and definitely not medications. I believe porphyria is at the root of all my health issues but I’ve never found treatment for it, I’m on Medicaid and cannot find any help 😢
My Hematologist reached out to a Porphyria Specialist and he never replied, I am one who is having to take a long trip. As my specialists are referring me out. Thank You all for your passion to help people suffering with this illness. I pray I find the correct diagnosis and hope to feel better soon, even to identify this unknown phantom. If I do get better, I will offer to educate others in my state, as much as my health allows. ❤
I wish everyone had your altruistic attitude. Thank you
Giving thanks
Feeling more comfortable
Great information
Thank you. I believe this is what I am dealing with. I am 66. I gave up on Sara before they killed me.
I do extreme avoidance, and run damaged systems on manual. But still have 60-80 really horrific days.
I'm sorry to hear that. Please contact us at general@PorphyriaFoundation.org or call 866-APF-3635. We can send you a free doctor packet, recommend a doctor in your area and answer any questions you may have. We have supports groups and educational programs.
Wonderful lecture! Thank you for this seminar. This is the most thorough discussion of this topic that I’ve seen. It is very understandable and was well communicated. Thank you Dr. Smith, Presenters, & APF!
Hola me da muchísima pena no entender.muchisimas gracias por vuestra labor y vuestro trabajo
How many drs. Have nor want to create another problem in their practice to diagnose a cluster diagnosis
Can anybody tell me if the abdominal pain is spasmodic. I have a severely mentally and physically daughter who every few weeks.. sometimes goes into
Spasms that lasts for hours..it's rhythmical 1 minute. Then 30 secs if spasm which gives her agony. Sometimes she will go for an hour or two in the morning then it goes off then comes back in the evening. She has no verbal communication and doctors are baffled and sadly not very helpful?
I have Bad Neuropathy, and it is movinv to my other leg. Cannot get a diagnosis where I live. Have all genes, Homozygous inheritance, pathological alleles., symptoms all symptoms adding up and No treatment, I think my Dr.s are not sure what to do, and I remain in pain. Hoping a referral will get me to TX to see a specialist I live in NM. So Frustrating.... IV helps profound gut attacks (liver mostly). Blood counts are crazy... red/brown urine, rashes, fury face, I won't go on... This has been a lifelong phantom. ALA comes in high but no high PBG=no DX!! UGH. My Rheumatologist suspecting this years ago. Wish he hadn't retired, He would likely have treated me, as he saw it. The attacks are Profoundly "fall in the floor", pass out kind of painful . Thank You, Dr. and APF! Bless You for saving lives.
❤ THANKS THIS SID NOT MAKNE FEEL BWTTER AT ALL BUT QT LEAST IT WAS TRUTHFUL..TRUTH AND ETHICS ARE SUSTAINABLE
IM SICK OF BEING
Does 23 and me show the common mutations? I suspect genetic as both parents also had odd occasion hemolytic events that drs never figured out. And my mom died of liver cancer.
I went to a site and down load testing hope to speak with dr. Soon to see if this might explain these periods of horrific pain.
23 and Me does not do gene sequencing, but we can provide a free DNA test that does gene sequencing specifically for porphyria. We can send a doctor packet to help and we also have educational programs and support groups.Please contact us at general@porphyriafoundation.org or 866-APF-3635.
❤NOBODY owns it so NOBODY IS GOING TO MAKE ANY MONEY OFF OF IT
😪 IM NEVER GOING TO GET ANY HELP
I'm sorry to hear you're struggling. We are here to help! Please contact us at general@PorphyriaFoundation.org or call 866-APF-3635. We can send you a free doctor packet or recommend a doctor in your area and answer any questions you may have. We have support groups and educational programs.
❤ THANK YOU FOR COMMENTS NOBODY CAN EXPLAIN THAT FEELING IT SADDENS ME OUR MEDICAL PROFESSIONALS DONT CHOOSE TO SEE THE EVIDENCE..ITS NOT THAT COMPLICATED THE ISSUE HERE IS THEY WILL NOT MAKE ANY MONEY OFF OF OIT
"promosm" 🌹
Soy Ana Jiménez, de Bilbao españa, paciente de porfirias, con muchos problemas por parte de los sanitarios para un diagnóstico que es más que evidente, me diagnosticaron porfiria en 2017 y sin sentido,me quitaron el diagnóstico, quitándome la posibilidad de un tratamiento, mi hijo tiene sintomatologia también.esto no debería de pasar,pero por lo que puedo ver es un problema a nivel mundial, es una injusticia,lo único que hace esta situación es crearte una crisis tras otra.queria dejar constancia de mi situación y la de muchos pacientes, por desgracia.
@Jiménezcorralesana