Bandra resident Navnath Kolpe (30) and his family have been running from pillar to post for the last one year to collect money to treat a rare blood disorder he is suffering from.According to his haematologist, Navnath suffers from a rare disease called Paroxysmal Nocturnal Hemoglobinuria (PNH) and he needs Rs 80 lakh for stem cell transplant, the only cure. Matching cells are not available in India now and they have to be imported from the US.<!– /11440465/Dna_Article_Middle_300x250_BTF –>Navnath’s wife Aruna is a homemaker and they have a a six-month-old daughter Aaditi. He was working as an art director with a private firm. But for the last one year, he has not been working.PNH is a rare disease where the haemoglobin, red blood cells, white blood cells and platelets start decreasing.In December 2014, Navnath was diagnosed with the disease. Currently, he is taking treatment from Dr Shashikant Apte from Sahyadri hospital in Pune.”Navnath suffers from multiple problems like weakness, abdominal pain, dark urine, low haemoglobin levels and breathing difficulty. Till such time as he gets the stem cells, he would be on medication. For the last one year, he is not able to work and is at home because of multiple problems,”said Sunil Kolpe, elder brother of Navnath, who works as a teacher in a BMC school.”Our family members are trying hard to collect money for the treatment. Doctors say Navnath needs Rs 80 lakh for the treatment. But we have been able to collect only Rs 9.5 lakh. We depend on NGOs and well-wishers for the remaining amount,” he said.According to experts, steroids or other drugs that suppress the immune system may help slow the breakdown of red blood cells. Blood transfusion may be needed. Supplementary iron and folic acid are provided. Blood thinners may also be needed to prevent clots from forming.Talking to DNA, Dr Apte said: “Stem cell transplant is the only cure. We are searching different banks in India for a matching cell. Unfortunately, I could not find one within his family or relatives and need to look for donors, internationally.”What is PNH?According to the US National Library of Medicine, PNH is a rare disease, in which red blood cells break down earlier than normal. Blood cells of persons suffering from this disease have one gene, PIG-A, missing. This gene allows a substance called glycosyl-phosphatidylinositol (GPI) to help certain proteins stick to cells.Without PIG-A, certain proteins cannot connect to the cell surface and protect the cells from substances in the blood called complements. As a result, red blood cells break down too early. Red cells leak haemoglobin into the blood, which can pass into urine. This can happen anytime, but is more likely to occur during the night or early morning.


Hit by rare blood disorder, Rs 80 lakh cure in US, Bandra resident in a spot