Talk to General Physician on Congenital Erthropoietic Porphyria
Asking For Self, Female 24, Rawalpindi
hello doctors,
I am trying to find a doctor who can understand my rare condition and who can guide me properly. I know there's no permanent treatment for CEP but I want to improve my condition and for that I need a good doctor.
Dr. Syed Sardar Ali - Internal Medicine Specialist
MBBS, FCPS (Medicine) | Karachi
759 Positive Reviews
what are ur symptoms and who and how ur dr diagnose
Homayoun Sheikh - General Physician
MD, Specialty Certificate (Acute Medicine) UK, MRCP (UK), Post Graduate Diploma of cardiologist (UK) | Karachi
632 Positive Reviews
congenital erythropoietic porphyria is a disease that doesn't have complete cure so any senior well experienced specialist physician can control your condition
MD, Specialty Certificate (Acute Medicine) UK, MRCP (UK), Post Graduate Diploma of cardiologist (UK) | Karachi | Book Appointment
14 Positive Reviews
and there is many things that you should avoid
3 years ago
Patient
Post Owner
I have been to many doctors in the past 20 years and they all said that they can't do anything because my condition is rare.
3 years ago
MD, Specialty Certificate (Acute Medicine) UK, MRCP (UK), Post Graduate Diploma of cardiologist (UK) | Karachi | Book Appointment
14 Positive Reviews
avoid alcohol and prevent iron deficiency. if you go America they don't tell you more
3 years ago
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Patient
Post Owner
Hello Doctor Ali. Thanks for responding. I was diagnosed with CEP/ Gunther disease at the age of 2. I have severe photosensitivity. Due to accumulation of porphyrin my teeth are brown, Urine color is red. I regularly use a sunblock but still my face and hands have severely damaged
3 years ago
MBBS, FCPS (Medicine) | Karachi | Book Appointment
unfortunately only supportive treatment find some good hemalogist
3 years ago