Myself and my husband Adhithya will be running the Great Manchester Run - Half Marathon (13 miles/21km), which will be taking place on Sunday 22nd May 2022. Any donation from as many of you will be massively appreciated and all money raised will be going to a charity called Histiocytosis UK. 

Savithri's Story - A detailed read.

In November 2021, my mum presented with a mild fever. It was flu season and especially with covid around as well, initially we thought it was likely just a viral infection. She took paracetamol and some rest to see if it would settle down on its own. Three days passed by and she still continued to experience high temperature, but also developed a swelling under her armpit. Since this was new to us, we took her to A&E. She was quickly admitted into the emergency assessment unit and all her body parameters were being measured. Within 24 hours, things got a little worse and she started to experience difficulty in breathing, therefore, they moved her to the high dependency unit where patients are monitored very closely. Another 8 hours passed by and the situation escalated even further as her blood oxygen saturations dropped despite being supported with high levels of oxygen. She was then transferred to intensive care, where she was put into a peaceful sedation and her breathing was being supported by a ventilator and various drugs were administered to maintain her blood pressure and other body functions. Several investigations were done. After ruling out Covid, viral infections, bacterial infections, sepsis and also cancer, her tests eventually led to the diagnosis of two auto-immune conditions. Systemic lupus erythematosus (Lupus) followed by Haemophagocytic Lymphohistiocytosis (HLH).

Lupus is an auto-immune condition (when the body's natural immune system attacks itself) that can cause inflammation to several tissue types. It is often not easy to diagnose. It's also a condition that has a spectrum - mild to severe, so symptoms can flare up and subside at any time and may not always affect the same part of the body. Examples of symptoms include, skin rash, photosensitivity, joint pain, extreme tiredness to inflammation of major organs like heart, lungs and kidney which can be life-threatening. Currently, there is no cure for Lupus, but when it presents in its mild-moderate form, it can be kept under control. However, when Lupus presents in its most severe form like it did for mum, it can lead to additional complications such as to trigger more aggressive auto-immune responses. This can often lead to irreversible health effects with a high mortality rate. For mum, Lupus induced another auto-immune condition called HLH, which could not be brought under control. 

HLH is a rare but aggressive auto-immune condition, where a certain type of immune cell called macrophages become overactive and attack the body's own tissues/organs, particularly the bone marrow (where blood cells are made). Following a bone marrow biopsy, doctors identified that these macrophages had completely invaded mum's bone marrow and started to engulf and destroy all the other types of blood cells from performing their normal functions. This was the point at which mum's condition became irreversible and deteriorated. As a result, most of her organ functions had to be supported by external means and there was no room for treatment plans like immunosuppression, chemotherapy or a bone marrow transplant.

So what triggered Lupus followed by HLH? 

The answer is, we don't clearly know. However, putting together my mum's family history and her own medical history has given me some clues and the mental ability to fully accept the situation. Firstly, my maternal grandmother is positive for Sjögren's syndrome which is an auto-immune condition. Secondly, my mother’s sister is positive for Lupus. Familial inheritance plays a huge role in several medical conditions and I would not be surprised if my mum already had underlying unidentified genetic mutations that may have put her at a higher risk of developing Lupus later in life. Secondly, my mum herself was diagnosed with postnatal Rheumatoid Arthritis just after I was born in 1992. Following a year's course of steroids and physiotherapy, she fully recovered. However, again almost 15 years later, she experienced shooting pain in her parotid glands. This would start every morning after waking up and settle down over the course of the day with anti-inflammatory medication like ibuprofen. This episode lasted about a year and it naturally went away by itself. More recently, in 2019, mum experienced episodes of skin rashes called urticaria which resulted from photosensitivity. Already, we can see that these flare ups happened randomly without a pattern. They were quite mild and didn't disrupt her day to day activities. But the problem is, they often mimic symptoms of less life threatening conditions, which makes it very difficult to diagnose why they are happening. My mum did have tests for a range of auto-immune diseases when she did have these flare-ups, but none of her blood markers reached a high enough threshold for doctors to definitely conclude that she has Lupus. But my suspicion is, she always had lupus but just at very low levels that simply could not be detected with enough sensitivity. It was in November 2021 that finally, her test for Lupus was actually positive for the first time. The doctors who looked after my mum essentially said, the nature of these auto-immune conditions makes them so tricky to diagnose and for her it's been acting like a "timer" and was always going to kick-start at some point. 

Before November 2021, I thought cancer was the worst thing that could happen to someone, which is why I decided to specialise in Oncology myself. However, my mum's story has made me realise that rare and life-threatening conditions like HLH, require equal if not more attention and funding. Lupus was the starting point, but HLH was what took away my mum's physical presence. Histiocytosis UK is a research organisation which aims to raise awareness for the public and also medical professionals about HLH and the severity of this disease. Histiocytosis UK also helps to fund research programs across the country to help better understand this cruel disease, identify it quicker and bring about novel treatment strategies for a better outcome.

I want to take this opportunity to thank all the doctors and nursing staff who took great care of my mum. I will always speak very highly of the Royal Victoria Infirmary, which I regard as one of the best hospitals in the United Kingdom. I also want to thank all those involved in the Histiocytosis community and look forward to the day that patients with this devastating condition can be cured.

A few words of wisdom for all....

For me, my mother Savithri is the most inspiring person in my life and I am certainly not doing this "in-memory" of her as I truly believe she is not just my past, but my present and future too. She's taught me many important life-sessions and for me this is not a "tragic loss", but all about "gaining" her soul, strength and willpower. For many, grief is a tough journey. However, for me, my mother has made even that, a peaceful process, something magical, something unique. What she has taught me is very simple. Not to get absorbed into any negativity around me and to allow no room in my life for words/phrases like “gone”, “gone too soon”, “loss", “passed away” and “no-more”. Moreover, she has taught me the real depth of this whole process. Which is, to hold on tightly to her eternal spiritual presence more than her temporary physical one. For many, this concept might be difficult to come to terms with but for me, it makes perfect sense. None of us are permanent occupants on this planet. What really matters is the quality and purity of our soul and how many good things we achieve. Not, the quantity of our life span. Closure is different for different individuals, but for me, its about continuing my life with my mother in exactly the same way as before, because she has not disappeared anywhere.

I'm training hard and I know I can do this because my mum who is still very much alive, is going to be running with me too. Although I'm just moving my arms and legs, it's my mum who is really doing the cardio work for me and keeping my mind focused. I look forward to completing this race with my mother who has touched so many hearts and will always continue to and I take immense pride in being the daughter of Savithri Moorthy, my eternal Queen.