Nishat Fatima, 28 from Hyderabad, India was diagnosed with ITP, Immune thrombocytopenic purpura, a rare autoimmune disorder that can lead to excessive bruising and bleeding. She shares her journey through diagnosis and the challenges of living with this condition and how it changed her from being an active and jolly person.
Initial symptoms
In 2016, just a couple of days after my wedding, I was down with vomiting and dizziness. On one visit, my brother remarked that I looked yellow. The next day, I went to see a doctor and my blood test found my bilirubin level was 7. I got a second opinion from a bigger hospital, and they diagnosed me with Evan’s syndrome, a rare condition where your own immune system attacks your blood cells. Many people said have herbs and you will be fine, but my dad insisted that I see a doctor. I was admitted to a hospital as my condition worsened and was found to have a Hepatitis A infection. My hemoglobin levels had dropped so low that two transfusions were done. I was put on corticosteroids starting at 60mg and following up with my doctor at OPDs. Slowly steroids were weaned down to 2mg, all this time, my platelet count was normal.
A diagnosis of ITP, Immune thrombocytopenic purpura
Fast forward to 2018, I went to visit my husband in Saudi Arabia. Post marriage, I was also diagnosed with mild PCOS which made my periods irregular. In Saudi, I had heavy periods after 2 months. I was changing pads every 2 hours, it finally stopped after 11 days. The next month, after a trip from Umrah, my nose starting bleeding. When I held my head up, I could feel the clots in my mouth. It stopped after 45 minutes. 2 days after that, again I had a nose bleed for 3 days alternatively. This time, we rushed to a nearby clinic but since it was a Friday, no doctor was available. We then went to a hospital where a nose plug was inserted and I was referred to a Hematologist. The next day, complete blood work and scans were done to check for internal bleeding. On seeing my report, my doctor asked me to come in right away. My platelet count was 4000 and inquired if I had any bleeding or patches on my skin. I was given a diagnosis of ITP.
Pic above: First time I got an ITP related bruise
Steroid Treatment
Heavy dose steroids were on again but they did not help the platelet count. Plus it worsened my PCOS and increased my blood sugar levels. Immunoglobulin drip was then done for 48 hours. I was discharged with a diet and monitoring plan for my blood sugar. However, my sugar levels kept increasing and the doctor decided to put me on insulin. The insulin pen was easy to use and I was okay with it than just regular syringe needles. I learned how to make my own sugar test and my husband helped me to rid of the fear of using Insulin.
The steroid dose would give me energy bursts and I could manage all the household chores but when the dose wore off, I used to have a lot of weakness. On lying down, palpitations would begin. I was found to have Cushing’s syndrome. My weight had increased from 72 to 80 kgs and my face had swollen up. There was a huge difference in my physical appearance and people had started commenting on it, especially when we came back to India the following month. I had series of phases of depression and anxiety about few things which my husband helped me through (touchwood). I always tried to come out of it stronger. People’s ears were filled with statements that I always had some childhood illness that I had kept hidden. Whereas I used to be a girl who never had any story of illness before 2016. I was always the jolliest and active person. I used to be scared of injections and having tablets but this journey overcame all those fears.
Pic above: Getting an infusion
Balancing PCOS and ITP
In India, I gave Ayurveda a shot for a month but it did not help. My gums bled and my platelets were down to 7000. I went back to my old Hematologist and she suggested other medication options. She also discussed triggers that I should watch out for. For me, they were stress, exposure to infections in a large family, and my periods. I was put on Danazole but that was stopped when it started affecting my periods. It was a vicious cycle because weight gain from the meds worsened my PCOS and heavy irregular periods triggered bleeding episodes. But losing weight was very difficult. Out of desperation, I met an Unani person who gave me some tablets and tonic. My period flow started showing a lot of clots, but he said "let it all come out". One day, I had sudden anal pain and discomfort like I wanted to pass a motion, but it wasn’t coming out. The pain became so unbearable, I was rushed to a hospital. There, on the bed, I passed a huge ball of clot. It was terrifying and I stopped seeing the unani person.
Revolade, a new ITP drug was prescribed which worked for a short time. Then Romiplostim injections were given to increase the platelet count. Mid 2020, I wanted to try to conceive so for that I had to monitor my counts for 2-3 months, post which my Gynae could approve us going ahead with a plan to conceive. Due to PCOS, my ovaries do not make many eggs, so ovulation induction was done but after my 2nd cycle, I got a fever and it came to a halt.
Managing my days
In December 2020, I got a job and that has kept me preoccupied. I work from home which is helpful and keeps the stress at bay. I now take papaya supplements daily which seems to be working. I have no diet restrictions, but I stick to home-cooked food and intake of kiwi and papaya 2-3 times a week. ITP patients are recommended against gym use because bending during weight training can cause dizziness. My doctor advised walking which I enjoy and do a few yoga asanas. My biggest fear is getting a fever (which is a sign of infection) and heavy period flow.
My biggest challenge
I have a lot of weakness so I have to plan my days accordingly. I often end up canceling social events, especially family gatherings during such times. People don’t understand what I’m going through because it’s such an invisible illness. There have been many demotivating moments but the support of my husband and parents and younger brother have got me through. There were many times during this phase where I feel my Allah is giving me the strength to face my condition and the people around me. When Allah gives you any condition, he also makes sure that he is with you.
My advice to other ITP patients would be:
- Stay away from stress
- Keep a check on your platelet count. Watch out for skin bruising, petechiae, and patches.
- Be careful about cuts and burns.
- Young people should avoid contact sports.
- Be motivated even through the bad days.
