Sunday, August 2, 2009

I quite often read things from Cushing’s patients saying how their family and friends don’t understand the disease. I always feel bad for them. This disease really needs to be understood. I feel fortunate that I have a supportive family. I also have several friends that are pretty supportive.

But occasionally comments come back to me and I really wonder what other people think. I think the one that bothers me the most is when it’s said that they admire what I have done in getting my family diagnosed with Cushing’s, they don’t think they could do the same. The reason that bothers me – it makes it sound like diagnosis and treatment are an option not a necessity. 

If someone has Cushing’s or lives with someone with Cushing’s I think it becomes apparent that treatment is a necessity. Without treatment, patients will only get worse. I cannot imagine letting them live in constant pain, physically & mentally.

Here are some symptoms of Cushing’s.

  • Weight gain, particularly around your midsection and upper back
  • Fatigue
  • Muscle weakness
  • Rounding of your face (moon face)
  • Reversed sleep pattern
  • Facial flushing
  • Fatty pad or hump between your shoulders (buffalo hump)
  • Pink or purple stretch marks (striae) on the skin of your abdomen, thighs, breasts and arms
  • Thin and fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Depression, anxiety and irritability
  • Loss of emotional control
  • Thicker or more visible body and facial hair (hirsutism)
  • Acne
  • Irregular or absent menstrual periods in females
  • Memory loss & loss of concentration
  • Inability to lose weight
  • New or worsened high blood pressure
  • Glucose intolerance that may lead to diabetes
  • Headache
  • Bone loss, leading to fractures over time
  • GI issues
  • Severe muscle and bone pain
  • Just reading the symptoms doesn’t really sound all that bad unless you understand the disease. The fatigue and muscle weakness can be debilitating and the pain can be excruciating. The memory loss and lack of concentration can also be a big obstacle.

    I have heard that Dr. McCutcheon, who is our neurosurgeon, stated “Cushing’s kills” during a presentation at a national conference. It can just be a long drawn out, painful process. If you’re cyclic and your cortisol dips too low and stays for too long you could die. Cortisol is vital to life. Also, excess cortisol can destroy your body a little at a time. Muscle weakness – the heart is a muscle, high blood pressure – hard to control with Cushing’s.

    So, no there really wasn’t any choice about seeking a diagnosis and treatment.

    I’m not sure that I’ve really conveyed exactly how awful and debilitating Cushing’s can be. But trust me it is, it just slowly eats away at your body and your mind.


    Hi, I'm Rene said...

    I feel exactly the same way. It's not like it was on option to do otherwise.

    judycolby said...

    I know, how could we live with ourselves, and them, if we just let their illness slide?

    Anonymous said...

    Not all parents would fight for their children's health. You ARE a hero, Judy!

    Best of luck with Bill's upcoming surgery. How's he doing?