I am 63 years old, and am on this journey for the past 12 years, since I was diagnosed with it after a negative reaction to the Yellow Fever vaccine I took when visiting Kenya.
I had gum bleed after 25 days of the vaccine but dentist was unable to diagnose the cause. Repeated medication controlled the bleed, but after two months I had massive bruise in my thigh and extreme fatigue. My platelets had dropped to 26k. I had no fevers of any kind, was not any medication, and I don’t take painkillers.
( I have had two C sections when 21 and 27 years old, I was perfectly healthy and even after menopause I had a healthy count of around 2 lakh)
After this, a Bone Marrow test showed I had enough Megakaryocytes, so cancer was ruled out and was diagnosed with ITP .
I started with 60 mg Prednisolone, which did increase the count, but steady tapering led to lower counts.
I didn’t want to consider more potent medication as I am hyper sensitive to drugs, and my hematologist recommended me a maintenance dose of 5 mg or a max of 10 mg, life long. I am on 10 mg, as I tend to bleed, when count drops to 30 k with even 7.5 mg dose.
I have been very fortunate to be able to read about and understand this disorder and make my own changes to help me have a near normal life with the least possible drug support.
I maintain a reasonably good blood parameter on most counts, through strict diet control combined with regular exercise and walks.
But this change was not easy. The steroid has given a lot of not only physical but mental, psychological, emotional side effects. I have once again been blessed to find ways to cope by watching comedy, listening to music, meditating, continuing my crochet, even having had a once in a lifetime opportunity to be involved in Theatre, recently .
I want to share my story as I struggled to find information in Indian websites regarding this disorder and how to manage it. I came across a wealth of information about my condition from UK – healthunlocked.com and US – pdsa.org site. I read about how Yellow Fever Vaccine could affect some people . I learnt about predisposition to Auto Immune Disorders through aarda.org, ( my mother had RA, I was also diagnosed with RA after I got ITP. So predisposition to Autoimmune Disorders was present in my case) I learnt about Live and Killed vaccines, read about Platelets, followed Functional Medicine guidelines that had begun in the US then.
I changed my diet, after learning what suited me through the Elimination process.
I have avoided the following for a decade – Sugar, packed stuff, gluten – but I do indulge in a few treats now and then. I take a few vitamin and mineral supplements too.
Having a personal trainer has been a life changer as I have got fit enough to even enjoy mild trekking. My Trainer Pradeep has helped me to not only walk 5 km from not being able to walk even 500 mts without gasping for breath, but has been my primary support the past 4 years, in my fitness journey. All these have helped me to keep myself fit enough physically and mentally to live as normal a life as possible.
It is not easy, but definitely worth it.
I chose to manage this disorder on my own as I got frustrated after endless visits to various specialists, Today I get regular dental and eye check ups, as long term steroid affects both in a big way. I maintain a Hba1c of 6.1/6.2. Most of my other parameters are quite good, with no other medication.
Even now i do have mood swings, fatigue on and off, emotional Dysregulation, some memory and cognitive issues. However I try not to overstrain so that I maintain a count of at least 50 k. But I am able to do this only with 10 mg Prednisolone every day. However at times I do get gum bleed and bruises if I overstrain. I travel now and then, I keep myself busy with my crochet, practicing my music, meeting friends, going out etc. , with a lot of planning to not tire myself out. I enjoy every day as much as I can.
The most important thing I would like to say is that more of us should come out to speak about the conditions we suffer from. Auto immune disorders are mostly Invisible. But many Rare diseases are even more complicated and we need to vocalise our struggles. Most of us don’t look sick at all, but we are walking on a sword’s edge every single day. The 12 year experience has been very difficult at times, but I have been able to bounce back every single time. Resilience is inbuilt in all of us, and I am proud of overcoming any challenge – the disorder , and the side effects of steroids have brought about.
It would be wonderful to have a platform to talk about the various aspects that debilitate us in our day to day affairs. I wish physicians/ hospitals/ NGOs could help us in making such a platform accessible, as no one seems to know anything about Auto Immune Disorders, and even less about Rare Diseases.
I am grateful to my children who have been a tremendous support as I had also to take care of my husband who suffered from two strokes and Covid. Unfortunately he passed away three years ago.
I have always maintained that each person is responsible for his or her health to prevent lifestyle disorders.
But in Immune System Disorders, Genetic Disorders, we need the support of family, medical fraternity, along with para medical fraternity, therapists, friends and volunteers.
I am grateful for all the support I have been blessed with, and have joined as a volunteer to extend a helping hand to ORDI in any small way I can.
Kudos to Mr. Prasanna Shirol and Team for their indefatigable efforts at providing succor to children with Rare Diseases.
Happy to be associated with ORDI
