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Doctor insights on: My Father Was Diagnosed With Porphyria Should I Be Worried For Him

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My father was diagnosed with porphyria. Should I be worried for him?

Porphyria in family: It depends on what type of porphyria he has. Some porphyrias can be dangerous, and some can be hereditary so you need to ask him what type he has so that both you and he can get appropriate advice from your physicians. ...Read more

Dr. Aletha Tippett
93 doctors shared insights

Porphyria (Definition)

Metabolic disorders caused by abnormalities in the synthesis of heme, the portion of hemoglobin which carries the iron inside red blood cells. Symptoms can range from light sensitivity to liver failure to nerve damage to bouts of terrible pain.Special testing is required to ...Read more


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My father was diagnosed with hyperpigmentation. Should I be worried for him?

My father was diagnosed with hyperpigmentation. Should I be worried for him?

Need more info: What sort of hyperpigmentation are we talking about? It's a descriptive term (darkened skin), not a diagnosis. There are literally dozens of causes for it, most of which are harmless, but we need more information to give you an honest answer to your question. ...Read more

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My father was diagnosed with systemic sclerosis. Should I be worried for him?

My father was diagnosed with systemic sclerosis. Should I be worried for him?

Timely help is key: Systemic sclerosis remains a challenging disease in the field of rheumatology where struggle for a cure or even targeted therapy is ongoing. Most patients donot have adverse outcome but in case of lung and kidney involvement prognosis can be poor. There are many other areas of the body affected by it but they don't seem to be dangerous rather patient lifestyle and medication can help. ...Read more

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My father was diagnosed with b-blocker overdose. Should I be worried for him?

My father was diagnosed with b-blocker overdose. Should I be worried for him?

Possibly: It can be dangerous and deadly, but if managed and monitored properly, there should be no long term issues. ...Read more

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My father was diagnosed with ruptured spleen. Should I be worried for him?

My father was diagnosed with ruptured spleen. Should I be worried for him?

YES & NO: Traumatic ruptured spleen is now managed expectantly in the hospital meaning 'watch and wait'. So if the patient is stable with no signs of hemorhage then it is safe to not do surgery and then send the patient home after observation. If there are signs of major hemorrhage soon after injury then immediate surgery is indicated. Complications of emergency surgery are related to overall health. ...Read more

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My father was diagnosed with lung nodule. Should I be worried for him?

My father was diagnosed with lung nodule. Should I be worried for him?

Needs investigation: Lung nodule needs to be investigated to ascertain the underlying pathology. It may a residua of an old infection, an easily treatable infection or lung cancer. Worrying would not address the issue. Your father should see an internist or a pulmonary specialist. ...Read more

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I was diagnost with HPV dysplasia today by my gynecologist. I ask him if this needed to be treated and he told me no but now i'm worried?

I was diagnost with HPV dysplasia today by my gynecologist. I ask him if this needed to be treated and he told me no but now i'm worried?

Depends : Nearly everyone , or most, have been exposed to hpv. That's not the issue. At your age though want to follow closely to make sure it goes away. Make sure you don't smoke. Keep healthy and hopefully you're next check up will be negative. ...Read more

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My father was diagnosed with cavernous sinus thrombosis. Should I be worried for him?

My father was diagnosed with cavernous sinus thrombosis. Should I be worried for him?

Yes: Cavernous sinus thrombosis is often a complication of infection elsewhere in the head, sinuses or orbit of the eye. It can be extremely severe and life-threatening if not managed quickly and appropriately. It is an uncommon condition and one should be certain of the diagnosis since other conditions may mimic this. ...Read more

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My mom was diagnosed with Parkinson's disease 2 yrs ago. Am i likely to have it too? What are the odds? Should i be tested?

My mom was diagnosed with Parkinson's disease 2 yrs ago. Am i likely to have it too? What are the odds? Should i be tested?

No Definitive Test: Although pd can run in families, we still do not have a definitive test. You can see the neurologist that your mother sees and get an opinion. Some new scanning techniques (dat scans) can be helpful in certain circumstances. But, no one can administer a test that will give you a concrete answer. Pd is made on what we call a clinical diagnosis, but you need to see a movement disorder specialist. ...Read more

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What questions should I ask my doctor if I was just diagnosed with hepatitis?

What questions should I ask my doctor if I was just diagnosed with hepatitis?

Etiology: hepatitis =inflammation, you want to know what the inflammation is caused by. (viral hepatitis, fat, alcohol, etc). how best to modify your risk factors, and lifestyle changes you could/should make. and you want to know how much damage has been done - how much scarring there is, and how well is your liver functioning. ...Read more

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Should i be concerned if my 8 month old baby was just diagnosed with type1 diabetes?

Should i be concerned if my 8 month old baby was just diagnosed with type1 diabetes?

Yes: Requires experts to help you manage their now lifelong disease- must be seen by pediatric endocrinologists. ...Read more

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My mother was diagnosed with pre-diabetes. What should she do from now on?

My mother was diagnosed with pre-diabetes. What should she do from now on?

Lose weight: Since you can't change your age or genetics, the only factor you can change is to lose weight through diet/exercise. Some would even advise beginning medication like metformin to lower your risk of progressing to true diabetes. Also, make sure BP and lipids are controlled. ...Read more

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If I was diagnosed with bradycardia, .Should I be worried?

If  I was diagnosed with bradycardia, .Should I be worried?

Depends: Asymptomatic bradycardia frequently does not require treatment, however , if you have had symptoms of lightheadedness or syncope(passing out) further evaluation/treatment is necessary. Review of any med that may be contributing is essential. Discuss with your doctor. ...Read more

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Should i be concerned if my daughter was recently diagnosed with biotinidase deficiency. Need help with reading lab report(s).?

Should i be concerned if my daughter was recently diagnosed with biotinidase deficiency. Need help with reading lab report(s).?

VERY concerned: If you do not follow instructions exactly, your daughter will end up severely disabled. If you comply, she should have a good life. This is why we test for it. And please forgive my frankness -- if the folks who gave you the reports did not explain them clearly, go right back and demand that they do so. Everything depends on your being accurately informed and pro-active. ...Read more

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Should i be concerned if my daughter has just been diagnosed with nueroblastoma. . Anybody have any experience, advice on nueroblastoma?

Should i be concerned if my daughter has just been diagnosed with nueroblastoma. . Anybody have any experience, advice on nueroblastoma?

Neuroblastoma: Neuroblastoma is the most common solid tumor is very young children. Neuroblastoma is a heterogeneous disease in that in sometimes requires very little treatment, or it can require very intensive treatment. Treatment all depends on the extent of disease (staging) and the biological features of the disease. See: http://www.Cancer.Gov/cancertopics/pdq/treatment/neuroblastoma/patient/page1/allpages. ...Read more

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Should i be concerned if my 83 year old granmother was just diagnosed with lung cancer.?

Should i be concerned if my 83 year old granmother was just diagnosed with lung cancer.?

Yes: I'm sure you've had her to her physician he's the one who can give you the answers you ask based on his findings 7 how extensive the disease is/. ...Read more

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My son was diagnosed with colitis. Is that something I should worry about?

My son was diagnosed with colitis. Is that something I should worry about?

Yes: I assume you are talking about ulcerative colitis(uc). Uc is chronic condition and persist life long. It gets better with treatment. There are very good treatments. However needs maintainece treament to keep it in remission. If not treated properly it can have serious complications. ...Read more

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My husband was recently diagnosed with dysthymic disorder. What should I expect from here?

My husband was recently diagnosed with dysthymic disorder. What should I expect from here?

Expectations: He has a form of deprssion. He will need to be in individual counseling and he may need to be on antidepressants. He may need to be hospitalized if his condtion gets worse. Hopefully, he will begin treatment and he may not need that. Make sure he keeps his appointments. He may benefit from group therapy. A supportive family will be a big asset. Be understanding. ...Read more

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My father was diagnosed with porphyria. Should I be worried for him?

Porphyria in family: It depends on what type of porphyria he has. Some porphyrias can be dangerous, and some can be hereditary so you need to ask him what type he has so that both you and he can get appropriate advice from your physicians. ...Read more

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How is porphyria diagnosed in britain? How big is possibility that I am ill on porphyria if one of my parent and grandparent have porphyria.

How is porphyria diagnosed in britain? How big is possibility that I am ill on porphyria if one of my parent and grandparent have porphyria.

Quite good: Even with Britain's terribly dysfunctional health care system, getting the basic blood work to check for variegate, acute intermittent and coproporphyria should be feasable. ...Read more

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What kind of specialist diagnoses and treats different types of porphyria?

What kind of specialist diagnoses and treats different types of porphyria?

Porphyria: See a neurologist or a dermatologist at a university teaching hospital. ...Read more

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Where can I find a porphyria expert?  what other type of doctor can diagnose me properly and what type of specialist should I see if I have porphyria.  

Where can I find a porphyria expert?  what other type of doctor can diagnose me properly and what type of specialist should I see if I have porphyria.  

Porphyria: The doctor that usually takes care of porphyria is a hematologist. The american porphyria foundation will be able to provide you with a list of experts in your area. ...Read more

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How does one get porphyria?

How does one get porphyria?

Inherited: Typically inherited problem in the breakdown of red blood cells, in particular heme. The abdominal pain and crises can be set off by medications, alcohol, or low calorie diets. Medications that cause include but are not limited to barbiturates, anticonvulsants, estrogens, oral contraceptives, or even supplements (chromium for example). ...Read more

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Can men have acute porphyria?

Can men have acute porphyria?

Yes: Both men and women can have acute porphyria. However, attacks are more common in women because of hormonal changes that occur during the menstrual cycle. ...Read more

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I have porphyria what can I do about it?

I have porphyria what can I do about it?

See a hematologist: This is a genentic disease of the blood. You would best be served by seeing a hematologist. ...Read more

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How is acute porphyria diagnosed usually?

How is acute porphyria diagnosed usually?

Urine PBG: Porphobilinogen. It's a test fraught with pitfalls and if the specimen isn't collected exactly right, you'll get a false negative. A few variants require other assays. ...Read more

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What is the most serious type of porphyria?

What is the most serious type of porphyria?

Porphyria: Probably Acute intermittent Porphyria with multiple organ involvement. Consult a Neurologist for more details. ...Read more

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Are people with porphyria going to die early?

No: The porphyrias are troublesome illnesses, but once diagnosed, patients usually learn to manage them on their own, avoid the triggers, and get through life like the rest of us. ...Read more

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Porphyria, what is the difference between epp, cep and pct?

Porphyria, what is the difference between epp, cep and pct?

Porphyria types: The difference between porphyria types is the deficiency of different enzymes involved in heme biosynthesis. ...Read more

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Can porphyria cause high bilirubin?

Can porphyria cause high bilirubin?

Might occur: Some variants of porphyria can affect the liver and cause abnormal liver testing. You can get answers by analyzing your urinary and serum porphyrin levels, and this could allow interventional approaches to bring under full control. ...Read more

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What can cause porphyria victims to crave blood?

What can cause porphyria victims to crave blood?

Old legend: There's an idea, probably ill-founded, that congenital erythropoietic porphyria, which produces hairiness, a mutilated face, red teeth, and pain on going into sunlight is the origin of vampire / werewolf tales. The tale that these people crave blood (this isn't a classic feature) may have been added as the story grew, though heme is one factor that suppresses some forms of the illness. ...Read more

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Do high level of porphyrins always mean you have porphyria?

Do high level of porphyrins always mean you have porphyria?

Not always: Increased protoporphyrin levels may be a sign of: anemia, chronic disease, infection, iron deficiency anemia and lead poisoning to name a few. ...Read more

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What is the definition or description of: porphyria cutanea tarda?

What is the definition or description of: porphyria cutanea tarda?

Poor blood formation: Porphyria cutanea tarda (pct) describes a state where heme formation is poor. Common symptoms for a person exposed to sunlight are peeling fingernails and skin blisters. Exacerbating factors are iron, alcohol, and estrogen. Pct has a strong association with hepatitis c infection. ...Read more

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What is the treatment for porphyria?

What is the treatment for porphyria?

Depends: Panhematin, lumitene are some of medications used to treat this disease, it is very important to see a doctor and get specific counseling about how to avoid acute attacks. ...Read more

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Can porphyria cause high urinary copper?

Can porphyria cause high urinary copper?

No, it does not: However, there are several copper metabolism issues that can occur, including Wilson's disease, and a serum ceruloplasmin level can objectify some of the concerns. ...Read more

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Can someone with porphyria cutanea tarda make babies?

Can someone with porphyria cutanea tarda make babies?

YES!: Although rare, pregnancies have been reported in women suffering from porphyria cutanea tarda with good outcomes. Expert care from a maternal-fetal medicine, dermatology, hepatology and metabolism specialist is essential. ...Read more

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Does porphyria show on blood tests? Please, need some answers?

Does porphyria show on blood tests? Please, need some answers?

Treacherous: Your physician needs to think of porphyria, then order special labs depending on the type. Further, these tests are often done wrong; the sample must be collected exactly right and the problems just start there. Further, the person much actually be sick for the tests to turn up positive. ...Read more