Feeling empowered
Lady on the phone told me excitedly, "I gave birth to a healthy male child ma'am! Thank you for everything!"
I was happy to hear the voice of this young lady.
Two years ago, this lady in her twenties came to see me in my clinic, along with her mother and uncle. The entire family looked quite distressed. Mother was first to speak, she said her daughter was married for three years and still is not a mother. I thought, they came to the wrong doctor she should be seeing the gynaecologist.
The girl looked scared, pale and exhausted. She was barely speaking. She travelled that morning from her in-law's place about 200km from Bengaluru, a rural village in neighbouring state of Andhra. I started talking to her in Telugu, that made her comfortable.
She said, she has been having nose bleeds, bleeding from her mouth, increased bleeding during menstruation and is feeling extremely tired. All these symptoms she has experiencing for about 6 months or more, added to all physical symptoms, the constant taunts from her in-laws for not having children was making her life lot more miserable.
Clinical examination revealed severe pallor, petechiae that is bleeding into the skin, mild enlargement of the spleen. All this giving an indication of underlying possible hematological disorder. I told her we need to evaluate this in detail. Told her to get blood tests done and if needed we will be doing further studies.
I have always noticed that patients are not happy when we ask them to get more investigations done, somehow most of them want immediate magic treatment. Medicine is no magic! I was here trying to explain that her daughter is sick and needs evaluated and mother was worried about her daughter not having a child. Our culture and poor health literacy are to be blamed.
"Health literacy" is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.
They were back in 2 days with all the investigations, her hemoglobin was 7mg/dl platelet count was 12,000cells/mm3. Her iron levels were too low. All other investigations were normal. Peripheral blood smear did not show any evidence of leukemia or marrow failure. Viral markers were negative, autoimmune markers for lupus were negative. Platelets were dangerously low that explains her symptoms of bleeding. Low hemoglobin was probably nutritional and also secondary to bleeding. I asked her lot more questions to rule out all probable causes of low platelets.
Mother said she said similar episodes of bleeding few years back and they did couple of tests including a bone marrow and everything was fine. She was given few medicines and she was fine. They have lost all old medical records.
With all the available clinical history, examination and investigations, I concluded it to be ITP that is Immune thrombocytopenic purpura.
ITP is a rare bleeding disorder characterised by a low amount of platelets in the blood. Platelets are needed for clotting of the blood. In patients with ITP, a person's own immune system creates antibodies that mark healthy platelets as "forgein substances" and then mistakenly attack and destroy them.
ITP is usually diagnosis of exclusion, when all the other possible causes are ruled out. It can be an acute or chronic type. Considering she had prolonged history it fits into chronic type of ITP.
Now came the most difficult part, communicating to the patient what disease she had and how it can be treated. Treatment of ITP depends on the severity of the symptoms. In some cases no treatment is required, but in most cases we need to give drugs that alters patient's immune system which includes corticosteroids and other immunosupressive agents. Treatment involves regular follow up, monitoring platelets and also look for potential side effects of these drugs. In plain terms it is a prolonged process.
Next one hour I explained the patient about the disease, symptoms, treatment, side effects and everything possible with pictures in simple terms. I just send away patient 200kms away with 12,000 platelets and high dose of steroids, it scared me to do that. I gave her a detail referal letter if she wanted to continue treatment with a local physician. I felt like I was talking to a wall, patient was either too shocked to react or probably didn't understand what I meant. I started her on oral steroids and also medications to correct her iron deficiency. Told her to come back after 2 weeks and repeat platelet count.
I only hoped that patient understood. The lady represented every day woman we see, hardly educated, married off at an early age and has very little finances or choice to understand her health and take care of herself.
I knew I would probably never see her again, I was pleasantly surprised to see her in my office after 3 weeks. She came with her husband this time, looked a bit more cheerful and expressive this time. Her bleeding symptoms had decreased marginally, platelets too improved marginally to 20,000. I told her we will be continuing same dose of steroids and re emphasised on possible side effects. She took the pictures I drew previous time and asked how her immune system is working now? I was impressed! I enthusiastically answered all her questions.
The journey of her ITP continued for next year and half, each time she came back she looked lot more confident, she had educated her entire family about her condition and how she is tackling it. During the course of this year, there were few up and downs, platelets were improving but she had developed few complications with steroids like weight gain, infections and even steroid induced diabetes and we had to adjust the medications. Finally her platelets were more than 50,000 for good 3 months on a minimal dose of steroids. I thought finally we reached the fine balance. it was right time for her to plan her pregnancy.
She conceived 2 months later when she was off steroids! Through out the pregnancy lot more monitoring was required and it was mostly uneventful. Platelets started to drop to 30,000 in last trimester and I had to refer her to the hematologist who took over the charge, he started her back on steroids and finally she delivered a healthy male baby.
During one of her visits, this lady told me that she was thankful that she met me. She said her disease had actually empowered her, she knew lot about herself and she is able to take decisions. I thought what a great way to look at a chronic disease and actually coping with it.
Women are still primary caretakers of their families across all the cultures. They can become one of the prime ways to improve health literacy. Improving health literacy requires a multidimensional approach from all community members but can definitely start at the doctor's clinic.
I am glad that shy girl I saw in my first visit felt empowered with her disease.
I was happy to hear the voice of this young lady.
Two years ago, this lady in her twenties came to see me in my clinic, along with her mother and uncle. The entire family looked quite distressed. Mother was first to speak, she said her daughter was married for three years and still is not a mother. I thought, they came to the wrong doctor she should be seeing the gynaecologist.
The girl looked scared, pale and exhausted. She was barely speaking. She travelled that morning from her in-law's place about 200km from Bengaluru, a rural village in neighbouring state of Andhra. I started talking to her in Telugu, that made her comfortable.
She said, she has been having nose bleeds, bleeding from her mouth, increased bleeding during menstruation and is feeling extremely tired. All these symptoms she has experiencing for about 6 months or more, added to all physical symptoms, the constant taunts from her in-laws for not having children was making her life lot more miserable.
Clinical examination revealed severe pallor, petechiae that is bleeding into the skin, mild enlargement of the spleen. All this giving an indication of underlying possible hematological disorder. I told her we need to evaluate this in detail. Told her to get blood tests done and if needed we will be doing further studies.
I have always noticed that patients are not happy when we ask them to get more investigations done, somehow most of them want immediate magic treatment. Medicine is no magic! I was here trying to explain that her daughter is sick and needs evaluated and mother was worried about her daughter not having a child. Our culture and poor health literacy are to be blamed.
"Health literacy" is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.
They were back in 2 days with all the investigations, her hemoglobin was 7mg/dl platelet count was 12,000cells/mm3. Her iron levels were too low. All other investigations were normal. Peripheral blood smear did not show any evidence of leukemia or marrow failure. Viral markers were negative, autoimmune markers for lupus were negative. Platelets were dangerously low that explains her symptoms of bleeding. Low hemoglobin was probably nutritional and also secondary to bleeding. I asked her lot more questions to rule out all probable causes of low platelets.
Mother said she said similar episodes of bleeding few years back and they did couple of tests including a bone marrow and everything was fine. She was given few medicines and she was fine. They have lost all old medical records.
With all the available clinical history, examination and investigations, I concluded it to be ITP that is Immune thrombocytopenic purpura.
ITP is a rare bleeding disorder characterised by a low amount of platelets in the blood. Platelets are needed for clotting of the blood. In patients with ITP, a person's own immune system creates antibodies that mark healthy platelets as "forgein substances" and then mistakenly attack and destroy them.
ITP is usually diagnosis of exclusion, when all the other possible causes are ruled out. It can be an acute or chronic type. Considering she had prolonged history it fits into chronic type of ITP.
Now came the most difficult part, communicating to the patient what disease she had and how it can be treated. Treatment of ITP depends on the severity of the symptoms. In some cases no treatment is required, but in most cases we need to give drugs that alters patient's immune system which includes corticosteroids and other immunosupressive agents. Treatment involves regular follow up, monitoring platelets and also look for potential side effects of these drugs. In plain terms it is a prolonged process.
Next one hour I explained the patient about the disease, symptoms, treatment, side effects and everything possible with pictures in simple terms. I just send away patient 200kms away with 12,000 platelets and high dose of steroids, it scared me to do that. I gave her a detail referal letter if she wanted to continue treatment with a local physician. I felt like I was talking to a wall, patient was either too shocked to react or probably didn't understand what I meant. I started her on oral steroids and also medications to correct her iron deficiency. Told her to come back after 2 weeks and repeat platelet count.
I only hoped that patient understood. The lady represented every day woman we see, hardly educated, married off at an early age and has very little finances or choice to understand her health and take care of herself.
I knew I would probably never see her again, I was pleasantly surprised to see her in my office after 3 weeks. She came with her husband this time, looked a bit more cheerful and expressive this time. Her bleeding symptoms had decreased marginally, platelets too improved marginally to 20,000. I told her we will be continuing same dose of steroids and re emphasised on possible side effects. She took the pictures I drew previous time and asked how her immune system is working now? I was impressed! I enthusiastically answered all her questions.
The journey of her ITP continued for next year and half, each time she came back she looked lot more confident, she had educated her entire family about her condition and how she is tackling it. During the course of this year, there were few up and downs, platelets were improving but she had developed few complications with steroids like weight gain, infections and even steroid induced diabetes and we had to adjust the medications. Finally her platelets were more than 50,000 for good 3 months on a minimal dose of steroids. I thought finally we reached the fine balance. it was right time for her to plan her pregnancy.
She conceived 2 months later when she was off steroids! Through out the pregnancy lot more monitoring was required and it was mostly uneventful. Platelets started to drop to 30,000 in last trimester and I had to refer her to the hematologist who took over the charge, he started her back on steroids and finally she delivered a healthy male baby.
During one of her visits, this lady told me that she was thankful that she met me. She said her disease had actually empowered her, she knew lot about herself and she is able to take decisions. I thought what a great way to look at a chronic disease and actually coping with it.
Women are still primary caretakers of their families across all the cultures. They can become one of the prime ways to improve health literacy. Improving health literacy requires a multidimensional approach from all community members but can definitely start at the doctor's clinic.
I am glad that shy girl I saw in my first visit felt empowered with her disease.