The story of Jo Scott
Today is rare disease so I thought I’d share my story of being diagnosed and living with rare life threatening condition, Addison’s disease, to help raise awareness.
Addison’s disease is a rare, chronic condition brought about by the failure of the adrenal glands. Lifelong, continuous treatment with steroid replacement therapy is required. However, due to it being rare many people suffer for long periods before they are diagnosed or they go into what is known as an adrenal crisis which needs immediate treatment and if left untreated can lead to death. I took the dramatic adrenal crisis, very close to death route to diagnosis just under a year ago.
Looking back I can now see a gradual deterioration of my health, which I didn’t acknowledge particularly at the time. I was tired, extremely tired. But I’m a single parent, who works full time, has an underactive thyroid and it was the dark winter months so I figured push on, keep going, everyone gets tired and many people are worse off than me. So that’s what I did!
I started experiencing heartburn and burping/belching which I had never suffered from before and then this was coupled with vomiting. The vomiting stopped but other symptoms continued and so I tried changing my diet to reduce the heartburn symptoms but to no avail. I put it down to a sickness bug. A couple of weeks later I had the same thing, but worse. Another bug I thought, maybe I hadn’t fully recovered from the last one! The vomiting stopped again so after the advised 48 hours of being symptom free back to work I went. It was that week the periods of extreme dizziness started. I remember sitting with my head sticking out the window of my office to get fresh air and cool down, thinking people are going to wonder what on earth I am at doing but feeling that without the air I’d pass out. The heartburn continued and a friend suggested I go to see my GP. I am not one for going to the GP unless I think it’s really necessary and I felt a bit of a fraud to be honest, going to say I have heartburn type symptoms. But as my friend pointed out having a couple of bouts of sickness in close succession isn’t the norm and so made an appointment.
The GP prescribed tablets to reduce the amount of acid produced in the stomach with advice to come back if things didn’t improve. The tablets didn’t help but the speed at which I went downhill from there was very quick. I saw the GP on the Thursday and by Sunday I was in A&E waiting for a bed to become available in intensive care.
I had started being sick again on the Friday, on the Saturday I felt so awful I went to walk in clinic. Although I went by car as walking was very difficult due to weakness, fatigue, aches and dizziness. At home I had taken to crawling around my flat to the bathroom or to get more water. At the walk in centre they gave me anti-sickness tablets and told me to take Gaviscon. Neither of which helped. By Sunday I couldn’t keep anything down, water or rehydration drinks. Sunday was mother’s day! My daughter asked if I wanted to open my mother’s day present and I felt so ill I told her yes but it would have to be later when I felt a bit better. She asked me several times that day and in the end I had to have her do it for me and show me. I felt like the worst Mum ever! But even speaking felt like such a huge effort. You know when you’ve got a really stinking cold or bad hangover and say ‘I feel like I’m dying’ well this was definitely the worst I’d ever felt. I did feel like I was dying.
My Mum arrived that evening having flown from Ireland to London to give me a hand and bless her got quite a shock at the state of me I think. But I was very lucky to have her come or I might not be here to tell you my story today. She rang 111 again; I had spoken to them several times already over the weekend and wouldn’t have had the strength to do it yet again if she hadn’t been there. It was during this call they advised I go to A&E. So we (well my mum) lifted my poor daughter from her bed in the middle of the night, called a taxi and went to A&E.
Once I was eventually seen I can’t fault the care I received from those fabulous health care professionals at Barnet Hospital. It was established that I had dangerously low sodium levels, at levels which they would have expected most people to have already fallen into a coma with. They didn’t know why my levels were so low at that stage but I was told I would be admitted to Intensive Care as levels need to be brought back up slowly and under continuous monitoring and so that they could establish the cause.
After a couple days in intensive care it was established that I have Addison’s disease, but I caused a fair amount of confusion as I appeared to be missing one of the major symptoms that often helps with diagnosis, dark pigmentation of the skin. When the consultant mentioned this to me I told them I had Vitiligo which now affects the majority of my body. Vitiligo is a long-term condition that causes pale, white patches to develop on the skin due to the lack of a chemical called melanin, meaning the dark pigmentation didn’t present.
I am one of the lucky people diagnosed who was given an information booklet produced by the Addison’s Disease Self Help Group (ADSHG) by my doctor whilst I was still in hosptial. This was invaluable in terms of learning more about what I now had to live with. As well as coming to terms with your rare diagnosis, you have to learn pretty quickly as much as you can about your condition. You compared with most people, health professionals included, are the expert on your condition even if you’re fairly new to it due to it being rare. This fact became very clear to me soon after diagnosis.
I remember telling my Endocrine Consultant that leading up to my admission how I felt like I was dying and him quite matter of fact replying ‘Yes I am not surprised, as you were dying!’ Apparently if I had decided not to go to A&E when I did and waited until the next day, it’s extremely likely I wouldn’t be here today.
That’s the thing about having Addison’s disease, to me the scariest bit, in times of shock the bodies of those with Addison’s won’t produce the lifesaving steroids your body does. So essentially if people aren’t aware of the emergency treatment you require and administer it quickly you can die.
I am lucky enough to be doing quite well since diagnosis. I have had several ups and downs, including a crisis whilst in hospital. There are good days and bad days, but everyone has those. It can just be more difficult to explain the bad days to others when essentially with taking steroid medication you can appear to look very well even if you don’t feel it.
What would I like you to take away today?
Severe or prolonged vomiting is one of the main things to set off an Addison’s crisis requiring an emergency injection of hydrocortisone. If you are suffering from a sickness bug please try your best not to spread it. I know many people who still go to work or return back to work before they are fully recovered and this can essentially have serious implications for others with health conditions such as Addison’s disease.
Shock is another common cause of an Addison’s crisis. If you come across someone who appears to be very unwell or has been involved in an accident or incident causing shock, check to see if they are wearing a medical alert bracelet or tag for details about the emergency treatment they might require.
People with Addison’s who are lucky enough like me to receive care from medical professionals who are on the ball are likely to carry an emergency injection kit of hydrocortisone. Mine is always in my bag and it includes details on how to administer the injection. If you were ever to find someone with Addison’s who appeared very unwell or unconscious please give them the injection. It won’t harm them and may save their life.
To anyone recently diagnosed, yes it’s sh*t (excuse the language) but it does get better and you can come to terms with it and live a normal life. At least that’s my experience. Just remember to be kind to yourself!