My daily routine living with . . . histiocytosis

As sufferers, we’re left to fend for ourselves because the disease is considered too rare for international research to look for a cure; too rare for Government funding; and even too rare for national recognition

 

Imagine being diagnosed with a disease, but having to fend for yourself because it is considered too rare for international research to look for a cure; too rare for Government funding; and even too rare for national recognition.

Imagine relying on the knowledge and experience of others in a dedicated online forum, because they more likely to be better informed about your condition than a medical professional.

Imagine having an online forum as your first go-to place for answers in the case of a medical emergency – rather than your local hospital, because your experience is that doctors will probably overlook your condition.

Imagine having to fight your doctor’s decision for a second opinion, or never being able to relax, because, at any moment, this disease can resurrect from the dead.

Niamh Ní Ruarí.
Niamh Ní Ruarí.

Welcome to the daily struggles I, 16 others in Ireland, more than 1,500 in America, and more than 2,000 worldwide (and that’s just on Facebook, ) face living with the same particular “rare disease”.

With rare diseases, unless life-threatening, “big pharma” sees little benefit in searching for a cure. But for the small number with the disease, it can mean the difference between a good quality of life, or bad.

My daily routine living with... share your health experience

I have a disease called histiocytosis, a rare blood cancer, which, if you are lucky enough to survive it, as a compromise you are stuck with it for life. This disease, which was cursed on me at three years’ old, was treated with chemotherapy before going into remission for 10 years.

Fighting a battle

Unluckily, I had late effects, in the form of a degenerative condition called ND CNS with which I was diagnosed at 13 years old. After five years fighting a battle that would inevitably be lost – and because of a lack of treatment to prevent my condition deteriorating – I had to surrender to a wheelchair.

At 18, I faced a transition which could have been avoided, if only there was more empathy and compassion towards the lives of patients with rare diseases. I am just as entitled to a good quality life as anyone else, but I am denied this simply because of a disease considered too uncommon to be worth funding for a cure. A disease no one takes a second glance at because it’s unlikely to affect them or a loved one.

The unfortunate reality is that the world is run by money, and the sad case is that if an illness doesn’t affect enough people to cause an major impact, that illness is swept under the carpet and a blind eye is turned.

Surely we should be empathetic to ensure an individual a life of stability, regardless of the statistics of an illness, because life is about helping those less fortunate, and nothing is more unfortunate than having to face a problem alone. Nothing is more isolating than knowing you are the black sheep that no one wants to help.

A rare disease may be unlikely to knock on your door, but, if the day comes that it does, wouldn’t you like to be assured there is a cure? Fight for rare disease awareness. Care for rare.

Because I’m sure you wouldn’t like to find yourself facing a rare disease someday that no one gives a second thought about.

What is histiocytosis?
– An umbrella term applied to a group of rare disorders, it involves specific cells that normally have important roles as part of the immune system.

The unfortunate reality is that the world is run by money, and the sad case is that if an illness doesn’t affect enough people to cause an major impact, that illness is swept under the carpet and a blind eye is turned.

– Characterised by increased numbers of white blood cells called histiocytes in the blood and tissues, these cells attack the body, targeting many organs, including the bone marrow, liver, spleen, lungs, skin, bone and brain.
– Unlike almost every other cancer, it may spontaneously resolve in some patients while being life-threatening in others.

What is a rare disease?
– According to the European Union, a rare disease is one that affects less than one person per 2,000 of a population.
– There are roughly 7,000 rare diseases, though new ones are described in medical literature almost every day.
– Because of the number of diseases, an estimated 300,000 Irish people are affected by a rare disease.
– 80 per cent of rare diseases have a genetic component, though many only present for the first time in adulthood.

- If you would like to tell your story for this series, you can do so here. Alternatively, you can email health@irishtimes.com (please write "Daily Routine" in the subject line).
Thank you,
Damian Cullen (Health & Family Editor)

SOME OTHER ARTICLES IN THE SERIES
- My daily routine living with . . . Cystic Fibrosis
- My daily routine living with . . . Parkinson’s Disease
- My daily routine living with . . . lung cancer
- My daily routine living with . . . inflammatory bowel disease

- My daily routine living with . . . chronic fatigue syndrome
- My daily routine living with . . . histiocytosis

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