Wednesday, February 23, 2011

Disease Diablo. If I Had A Choice. Part 1

One upon a time in a land far far away there was a fair maiden, her name was Princess Lee-Anne.  Princess Lee-Anne suffered from a frightful disease called Multiple Sclerosis.  One day a Disease Diablo visited Princess Lee-Anne, who offered her one chance to change her disease.

There are so many terrible diseases in the world.  Sometimes when I'm thinking too much about MS, I wonder what my life would be like if I had a different disease.  I have never really looked into it before.  But now I have and you know what, they are all frightful with no cure.   

So if I was visited by a Disease Diablo (well it would hardly be the tooth fairy), who gave me the choice of staying with MS or choosing another chronic disease, would I kiss my MS goodbye for another affliction?

Would I swap MS for an irreversible progressive brain disease, such as Alzheimer’s disease?  All your memories are erased, your thinking skills are destroyed and eventually you are unable to carry out even the simplest tasks.  You will most likely end up bed ridden and in fulltime care.  Scientists are unable to locate a cause/s of this disease.  There is no cure, and very little treatment.  Perhaps the only possible upside to Alzheimer’s is that onset usually commences in your 60's - so that is 60 years of disease free living and disease free worrying. I would hate to loose all memory of my life and children - devastating, utterly devastating.... although I guess as the disease progressed, I wouldn't remember I had anything to remember.  Hmmmm, no, pass on Alzheimer’s, Disease Diablo.

How about Leukaemia?  Would I say yes to this blood disease, whose symptoms include, but are not restricted to fever, chills, loss of appetite and weight, abdominal pain, tender lymph nodes, malaise, bone and joint pain, excessive bruising and bleeding, vomiting, confusion, loss of muscle control, seizures and death?  It is a well-understood disease and there are several options for treatment, such as chemotherapy, interferon therapy, radiation, surgery and stem cell transplants, which have a list of side effects including many of the symptoms of the disease itself.  A good thing about the treatments is they are known to actually work and bring about remission and cure, but they can make you very sick in the process.  As everyone knows, I hate vomiting... so I would never voluntarily pick a disease where I am going to vomit or where treatment would make me vomit.  I just couldn't do it.  I know this seems very shallow and there are bigger issues with Leukaemia to consider.  But on the vomiting factor alone I would say no thank you Disease Diablo.

Would I swap MS for CF or Cystic Fibrosis?  It's treatment and daily management is intensive, including airway clearance and up to 40 enzyme replacement tablets per day.  I would also need to survive on a high energy diet with added vitamins, salt and exercise.  This is in the face of a persistent cough, difficulty breathing which is made worse by physical effort, lethargy, weakness, a frequent need to visit the loo and a poor appetite.  I think it must be a daily struggle to make your body do all the things it inherently does not want to do... After a lifetime of CF your lungs may be unable to fight back anymore and you may need a lung transplant to survive.  Those in the know, know which gene is responsible for CF and they know how the disease works.  It is a recessive genetic condition and it is present at birth.    There is no cure and CF can result in death if not managed and treated diligently.  I am a fairly active person with two energetic tots and currently my MS does not make me tired so I'm sure CF is not for me. 

What about Diabetes?  I'll run with Type 1 as its treatment puts it in the same field as my current treatment for MS.  However Type 1 Diabetes affects kids, teens and young adults and requires up to 4 injections of insulin per day.  If untreated you can suffer from ketoacidosis and death.  It's easily diagnosed, but prior to diagnosis you may suffer from thirst, frequent trips to the toilet, excessive hunger, blurred vision, weight loss, nausea and itchiness in your nether regions.  The exact cause is unknown (there is a question mark over virus as per MS) and there is no known cure.  However treatment for Diabetes Type 1 is excellent - diet, exercise and insulin are all important factors in its control.  I have established that I can do daily injections - could I do 4... yes, because they don't bee sting like Mr C.  I guess the big issue with Diabetes Type 1 is your age.  As a teen you are going to be pissed that you have to do something different to your friends and may rebel.  If I had Diabetes then I would hope this wouldn't mean eating badly and skipping medication.  Having Diabetes is a disciplined disease lifestyle.  You know what, I might consider swapping MS for Diabetes Type 1… if I could be naughty occasionally. 

Would I swap MS for a neurodegerative genetic disease such as Huntington's disease?  Huntington's becomes noticeable in middle age and affects muscle coordination and leads to cognitive decline and eventual dementia.  While scientists know a lot about his disease, it is not fully understood.  There is no cure for the unsteady gait, jerky movements, decline in mental abilities and the behavioural and psychiatric problems associated with the disease... you are able to prepare yourself for this decline via genetic testing.  (I'm not sure this is a good thing.)  There are some common complications with Huntington's including heart disease, falls and pneumonia - as if the disease itself wasn't enough.  Life expectancy after onset is about 20 years and you can expect to need fulltime care for some of this time.  There are some treatments emerging to relieve the symptoms of Huntington's disease.  Would I swap MS for Huntington's - no.  Huntington's is a steady but definite decline in health.  I don't know what lays ahead for my MS, and me but I'll take my chances thanks Disease Diablo.

To be continued...


  1. Isn't it all measureable??? Aren't people given what they are given because they are chosen and are the ones that can handle such things?? Just like your disease, weren't you delivered your husband and children because they were meant for you? I am sure your MS will be a degree that is meant for you for you to be able to cope with. And PS: Disease Diablo may be the opposite to a fairy, but to many is still a fairy.

  2. This is a great post, I have often wondered myself - would I trade MS for some other malady? My father has Leukemia and it is an exhausting disease, not sure I am up for that right now. The other one's do not sound so great either...

    Guess I will stick with MS as well...


  3. Dear Anon... perhaps you are talking about predestinarianism - that the divine has predetermined the course of events? Can you only hald subscribe to this belief?


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