I am Samriddhi Paliwal and I suffer from Congenital Panhypopituitarism.(CPHP) Congenital means by birth. Pan means all. Hypo means less or absent. So panhypopituitarism means less or no production of the anterior and posterior pituitary hormones. The pituitary hormones are: thyroid hormone, reproductive(sex) hormones, cortisol (ACTH) hormone, growth hormone, prolactin and oxytocin, mainly.
I was born prematurely a month before my due date. I had the umbilical cord around my neck which was preventing oxygen supply to my brain. I was underweight around 1.5 kg at my birth and very sick. I was kept in the NICU for around 20 days to a month and suffered from jaundice for 6 months after birth. I became a healthy child after my jaundice was cured, but I used to get high fevers (104 degrees) every 2 or 3 months for all my childhood.
I used to look younger than all the kids my age and was the shortest. Kids 4 -5 years younger to me were as tall as me or even taller. My mom started to notice that I was really short for my age and hadn’t grown an inch for more than a year or two, and coupled with the fevers she was worried sick and took me to a lot of doctors who just told her I’m fine and it’s just her being a hysterical worrying mother.
Quite a few doctors told her that I have downs syndrome, while others were sure I had Turner’s syndrome because I learnt to walk later than most kids, displayed a few symptoms and I started speaking quite late too. Oh and because I had a big forehead (moon face). I was deemed a special child, without any testing. They didn’t want to do tests on me and just pushed us away. It took a lot of fighting by my mom and visiting doctor after doctor, until finally at age 6, we found an endocrinologist who would listen to my mother and was ready to do testing.
He did a lot of tests on me like IGF 1 for growth hormone deficiency, x-ray for bone age (which was of a 3 year old, while I was 6), MRI of the pituitary gland in our brain with contrast which showed that I didn’t have a pituitary stalk and gland, Thyroid stimulating hormone (TSH), T2,T3,TSG for the thyroid hormone, cortisol and Adrenocorticotropic hormone (ACTH) test for cortisol (Stress hormone), and LH, FSH, prolactin, estradiol,etc for the reproductive hormones. Others were blood count CBC, Vit B12, Vit D, calcium, etc.
I was found deficient in all the hormones and was diagnosed with Congenital Panhypopituitarism due to Pituitary Stalk interruption syndrome and ectopic pituitary gland. The pituitary stalk that sends signals from the pituitary to hypothalamus in our brain was found missing in my brain, and that’s why my body was not getting Signals to release hormones. My endocrinologist started me on medication for thyroid and cortisol, and injection for growth hormone. They used to monitor my hormone levels regularly and the growth hormone really helped. I grew really quickly on the injections and it was like a wonder drug for me.
Cortisol helped me with not going into crisis due to hypoglycemia (low sugar) and low blood pressure mostly, even though I used to fall sick quite often. Apart from them, I had to take supplements for calcium, Vit D, Vit B12 injections, iron, copper and zinc. After growing up, I was also started on the reproductive hormones(estrogen and progesterone) to start getting my period It’s a chronic illness so I have to live with it for my whole life and continue with the injection and medicines for all my life, but it’s normal for me, even if it’s not normal for other people.
There are side effects of this illness too, like bone-crushing fatigue, some days I can hardly get out of bed, cold sensitivity, light sensitivity, low bone density, chronic pain(fibromyalgia), insomnia and a suppressed immune system which means I get sick very quickly to name a few. If my cortisol goes low I can go into crisis (which I have) and that’s dangerous, but it can be managed.
After everything, I wouldn’t exchange this illness for anything. It is tough, but God has made us (who suffer from any chronic illness/ rare disease) stronger to deal with it. It is a silent illness and that’s why it is even more necessary that more and more people get to know about this. I hope that by sharing my story, more people will get to know about this illness and if anyone has it or think they know someone who may have it, will get help from it.
It can be a lot to take in at the beginning and it’s scary too… but if there’s anything this illness has taught me, it’s to always keep fighting, being grateful, and always remember the 7-year-old me on the bad days, who believed in magic, and that there was fairy dust in her injections, and believed in miracles. That’s what gets me from one day to another.