Recently, my daughter discovered the Addison’s Disease Support Group on the Internet, and after speaking to the President, Noreen Secomb, my husband, Bernard and myself  were asked to comment on our family's Addison’s Disease history.

Previous to our children’s diagnosis with these polyglandular problems we had no family history of any of these illnesses.

We have had eight children, five boys and three girls presently between 37 and 15 years of age. Greg the eldest, has had Type 1 insulin dependent diabetes since he was 11. Catherine, our eldest daughter, died in 1977 aged 13 of Chronic active hepatitis, an autoimmune disease. Michael has had type 1 insulin dependent diabetes since he was 7. Elizabeth and Rebecca have no problems. Matthew, now 20 has Addison’s Disease and Coeliac disease. Damien, now 18, has type 1 insulin dependent diabetes, Addison’s disease and chronic sinusitis, Andrew, now 15, has Addison’s disease and sinus problems.

The three boys with diabetes are on a regime of four insulin injections per day ( with different insulins) special diet and three to six blood tests per day.

the youngest, Andrew, now fifteen years of age was the first to be diagnosed with Addison’s disease, but because he was so young, it was not identified quickly. He was nine years of age in grade 4 in 1992. He had been constantly ill since year 1. He had pains in the stomach, cramps, vomiting and headaches. His teacher, doctor and sometimes us thought that he may be adversely effected by school but he had no problems with his school work. He has always had a golden tan olive complexion. He would be free of symptoms for weeks and then become very ill once more. He was very active, good at sports and wiry in build. Over the next four years, he was tested for cystic fibrosis, guardia and coeliac disease. We noticed that school excursions always presented a problem. On an excursion, he had been supplied with a few drinks, but it was and exceptionally hot day and no extra fluids were available. He came home ill and delirious. The local doctor said he had been affected by the heat and was dehydrated. Andrew’s condition continued to deteriorate. He would only eat his meals and watch TV while sitting on the floor. Later we found out, that because he was dizzy, disorientated and "off balance" he felt more secure on the floor where he could not fall. He was constantly vomiting and nearly comatose. We took him to the endocrinologist who was treating other family members, who had him hospitalised where tests confirmed Addison’s disease. His blood pressure and pulse were very low. Andrew is now extremely sensitive to the slightest change to his blood pressure, probably because he was more ill before diagnosis. When injured, nauseous or vomiting, we give him 100mgs Solucortef by inter-muscular injection. He responds quickly, has a sleep and recovers completely in about four hours. Sometimes he needs to be admitted to hospital and given a drip. He is a competitive tennis player, a keen golfer, and plays indoor cricket. He needs to drink and eat responsibly to maintain hydration and energy levels.

Damien, now 18 years of age was diagnosed aged thirteen with type 1, insulin dependent diabetes mellitus, in 1992. He has a regime of four insulin injections, blood tests and diet each day. Damien had chronic vomiting since he was four. Whenever he had a vomiting attack, it could never be alleviated by injections or tablets but needed hospitalisation on a drip. He recovered fully in about one day. This happened about twice a year. In 1993, with routine tests conducted by his endocrinologist, he was diagnosed with Addison’s disease, aged thirteen. The double whammy in one year! This has complicated his diabetes as the replacement therapy of Hydrocortisone , Florinef and Dexamethasone sometime interferes with his blood sugar levels. Over the last three years, his health has been complicated by chronic sinusitis with many hospital stays needing general anaesthetic in the surgery. The pain and stress caused by these procedures have complicated his Addison’s disease and diabetes. Added to this, is the stress of the constant assessment procedures at school and the fact that he is absent from school often. Damien is accumulating at school, which means that he is allowed to study for his Higher School Certificate over two years instead of one. This has eased the strain by allowing him shorter school hours but unfortunately, has prolonged his period of stress.

Damien has been hospitalised on many occasions for Addison’s disease and for severe "hypo" attacks for diabetes. We give 250mgs Solucortef inter-muscular injections at home and prevent many trips to hospital. He experiences extreme weakness, fatigue, muscle weakness, nausea, lack of concentration, severe headaches (sometimes migraines), lowering of blood pressure and impaired short term memory. During exams and assessments Damien needs to increase his steroids because of stress.

Through all this complications, Damien is a happy and well balanced young man. He has played tennis and represented his school at cricket. He is looking forward to extra study next year with a future in the computer industry.

In 1994, Matthew then 16 years and in year 11 at school became very ill. The doctor thought he may have a brain tumour. He had severe headaches, was short tempered, experienced about 8kgs weight loss, lacked concentration, was unable to maintain body temperature , and bumping onto doorways and walls. He went to a neurosurgeon but after testing was diagnosed with Addison’s disease.

Not surprisingly, as parents, we now always look for complications to major illnesses so when Matthew once complained of stomach pains, nausea, vomiting, and disorientation we took him to the doctor for diagnosis as well as giving him the usual 250mgs Solucortef. The local doctor diagnosed appendicitis and he was operated on immediately for a gangrenous appendix. Hospitalisation for other illnesses causes complications for Addison’s disease. Matthew unfortunately has had recurring glandular during his HSC year and while at university has seriously interfered with his studies. He continues to be lethargic, underweight and lacks concentration. In 1996, he was diagnosed with Coeliac disease as he has a sensitivity to wheat, barley, oats and rye products. He is therefore on a strict gluten-free diet, which he finds difficult to maintain. He has a part time job and is presently studying at university for a Batchelor of commerce - Accounting Degree.

We encourage all of our children to be as active as possible and to participate in whatever sport they wish (within reason!). We accompanied them when they were younger to all sporting fixtures, to encourage, support, supply drinks and food and supervise medication and injections. They support one another and we have our own mini Addison’s disease support group at home.