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Writer's pictureRare Diseases SA

Listen to your Body #CushingDisease By Hettie Smith

I hope that I can bring some hope to other people out there.

I am a 43 year old woman. I had a very rare illness, called #CUSHINGSDISEASE and I have been in remission for 3 years after my successful pituitary surgery in 2015. I was always a healthy, chubby child. I went through years of teasing and struggling to find clothes. But being the positive person I am – I just carried on. I got married when I was 22 weighing about 115kg. At age 24 my 1st child was born. I had an easy pregnancy and had healthy baby boy. I only gained 8kg during my pregnancy.

2 years later I fell pregnant with my 2nd child. No struggle to fall pregnant, healthy boy – no problems. I gained 12kg this time and weighed almost 130kg when I gave birth. I struggled to lose the extra weight. I never managed to lose more than 5kg at a time-which I gained back, plus extra. Over the years my weight just kept on escalating. About 8 years ago all my problems started. I fell and hurt my knee. It got better, but it wasn’t 100%. Because the knee was so painful, I became less active and gained more weight.



had terrible #PMS. Every time I went to the Dr –he said everything will get better if I lose weight. I tried, but struggled. A few years later I developed high cholesterol and

became insulin resistant. Once again the Dr said it is because of being overweight.

I got bigger and bigger. I was constantly sweating and my face and chest were always blood red. I was swollen all over and I looked drained and tired.

In Aug 2014 I weighed 178kg. I was huge, constantly tired, out of breath, extremely depressed, knees and back so terribly painful –every step was a struggle. I noticed that my hair was thinning and falling out, my vision became blurry and I struggled to remember names and numbers. There was also a small hump on my neck and I had bruises everywhere. I knew something was wrong –but no use going to Dr because I knew what the answer would be. Aug 2014 I decided to go on diet again. I was really strict on myself. I managed to loose 20kg in 3months.

On my 40th birthday in Dec 2015 I was so so sick. I could hardly walk. Had terrible headaches. Everything was just a mess. I was super depressed. I cried all the time. Had terrible moods wings and could not sleep at night. I went to GP at least once a week at that time. She would give me different pain killers every time. I just didn’t get better. As the weeks passed I just got weaker and weaker. I could hardly put one step in front of the other. It was a daily struggle. I stuck to my diet 100% because I was so determined to lose the weigh, which I thought was the cause of all my problems. I was head of a Pre-school.

Beginning of term is always very hectic and stressful. We had huge renovations at school since the previous Oct 2014 and it was a very stressful time. I worked straight through Dec holidays and by the time school started on 15 January 2015 I was finished. I pushed through every day knowing something serious is wrong with me. On 13 Jan I had a panic attack. My friend took me to the Dr. I cried and cried and nothing could calm me down. Everything was just getting too much,. No one understood why I was so emotional all the time –neither did I.

And to top it all -the scale said I have lost weight, but my face and stomach just got bigger and bigger. By Feb 2015 I struggled to walk and was constantly weak and tired. I couldn’t drive my car anymore because my left leg was so weak I could not lift it up to push the clutch. I couldn’t write anymore because my right hand was in constant spasm. I had then also lost feeling from my bum, right down the back of my legs to the soles of my feet. It was so weird. I had almost no hair on the top of my head. I was in so much pain –especially my back.

I felt dizzy all the time, I was sweating, had bruises everywhere, couldn’t sleep at night, was bloated, forgetful etc etc –I was a mess. On 5 Feb I got ready to go to work. I was so weak I couldn’t lift myself out of bed. The weakness combined with being so overweight was very difficult. Instead of taking me to work, my husband took me straight to the ER. They treated me for extreme low Potassium (#Hypokalemia). I was in hospital for 5 days. I was given Potassium supplements. I was so weak and has lost so much muscle mass –I couldn’t do anything for myself.

I was bedridden for more than 2 months. A lot happened in that time…eventually I was forced to resign from a job I loved due to medical reasons. By April 2015 I got a little better. In May, out of the blue, my potassium levels dropped again.All of a sudden I was weak to the point where couldn’t sit or stand and was back in bed again.We didn’t know what was wrong. I change doctors. My new GP tested EVERY THING. The very last test she did was for CORTISOL. The results came back and it was SKY HIGH ! She referred me to an Endocrinologist. We did CT and MRI scans and 100’s of other tests and she confirmed that I had CUSHING’S DISEASE. What a relief to finally find out what was wrong with me. I had part of my Pituitary gland removed in June 2015. It was a slow recovery process.



It’now been 3 years since my operation and I feel like a new person. I now weigh 112kg. My hair has grown back. My memory is better, periods back to normal, eyesight better, normal blood pressure, cholesterol and sugar levels. I’ve been through hell and back. If I could change one thing in life it would be to teach people that

they should NEVER judge anyone, because you don’t know what they have been through….and to listen to your body!

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