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Addison’s Disease: Periods at 4 years, Menopause at 5

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A five-year-old girl from Australia who started menstruating at the age of four will soon start exhibiting signs of menopause, a result of Addison’s disease.

Emily Dover’s birth was absolutely ‘normal and happy’. By the second week, however, she started growing at an unusual rate. She was the size of a one-year-old by the time she turned 4-months-old. By the time Emily turned 2, she had developed breast buds, body odour and a rash on her skin that was diagnosed as cystic acne.

In addition to Addison’s disease, Emily has been diagnosed with congenital Adrenal Hyperplasia, Central Precocious Puberty, Autism Spectrum Disorder, Sensory Processing disorder and Anxiety Disorder.

The 5-year-old’s adrenal glands don’t produce enough steroid hormones.

Emily’s mother Tam Dover said her daughter is body conscious and aware that she is different from other children her age, reports Mirror Online. Sadly, the little girl is unable to understand what she is going through.

Constant pain and reduced mobility required Emily to undergo weekly physiotherapy sessions. At present Emily is five years old, and has started menstruating. After she starts a hormone replacement therapy, she will hit menopause, with all the side effects a woman over 50 years of age has to face.

“She hasn’t even had a chance to be a little girl. She’s having to learn how to put panty liners on for menstruating,” Tam tells Mirror Online.

Tam has set up a GoFundMe page to raise money to cover the ‘astronomical’ costs of her daughter’s treatments and medical care.

“Each time her growth was measured it was always way above the 99th percentile, and often 99th percentile for a couple of years above her age,” Tam wrote on the GoFundMe page.

From http://www.hindustantimes.com/health/periods-at-4-years-menopause-at-5-the-little-girl-who-never-got-to-be-a-child/story-p2kkpyd31fvsBzP21LDWcO.html

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Janice B, Pituitary Bio

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Cushing’s with a pituitary tumor. Had surgery on April 2013.

Surgeon nicked the pituitary gland giving me adrenal insufficiency. Sept 2016 went into adrenal crises while on holiday in Germany. I believe I was given too much prednisone as I have cushing’s again from too much prednisone.

I am working with my Endocrinologist plus an MD with a MSc who is an expert in nutritonal biochemistry.

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Lynne (jim4lynne), Steroid-Induced Bio

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My bushings has been caused by corticosteroids. I have been on steroids or 40years daily.for severe brittle asthma. I have been on prednisolone and iv steroids on hospital admissions for years. I did suffer from cushingoid symptoms caused by fluid but they settled as the steroids were reduced. About 4/5 years ago i was struggling with the extremely high doses of prednisolone so I was put on intramuscular Kenalog of 40ml/mg every 2 weeks. This was to be a short term fix but went on longer.

Unfortunately this was not monitored and reduced at all. Even though I was experiencing pretty obvious symptoms of bushings I could not gt anyone to look at this so I got worse and wore.

Eventually I saw my Resp Consultant on 4thJuly and got the diagnosis. This was a horrible relief.

Immediately I was put on a 2.5ml/mg education every 2 weeks to try to lower the cortisol levels.

Bit like closing the gate after the horse has bolted! To say this is hard is an understatement as what with the side effect from the cushing as everyone will know this is hell there is the withdrawal from the corticosteroids too. They all morph into one so I don’t know what is happening.

I have tried to get some answers from the medical profession but can’t get any information at all.

The Cushings side effect weight, stretch marks etc are still getting worse and I can only think that this is because I am still being loaded with steroids.

I appreciate that my bushings is caused by steroids and not a tumour but if any one has any advice how to cope with this I would be sooooooooo grateful.

All my best wishes to other sufferers.

 

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Natalie Stokes, Pituitary Bio

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A SINGLE mother suffering from a debilitating rare disease effecting her whole body has been left “disgusted and appalled” after being judged ‘fit to work’.

Natalie Stokes, of Saint Agnes Close in Studley, suffers from Cushing’s disease, a condition where the body produces excess steroid hormones. She had her disability benefits withdrawn eight weeks ago.

Natalie had her allowance withdrawn after an assessment carried out by the Department for Work and Pensions (DWP) in January deemed her ‘compos mentis’ and fit to work – despite both her GP and consultant brain surgeon providing a sick note.

The 33-year-old was diagnosed with Cushing’s last year after countless trips over eight years to see her GP.

She started claiming employment and support allowance (ESA) last January.

She said her condition, which has deteriorated over the years, is “changeable” and suffers fatigue, nausea, insomnia, irritability, memory loss, poor concentration and as a result depression.

Physically, Natalie is tackling life-limiting side affects which include, extreme weight gain, excess hair growth, a rounded ‘moon face’ due to fat deposits, thin skin, boils and severe pains from movement and incontinence.

She said she was “disgusted and appalled” at her benefits being withdrawn.

“Yes I can raise my hand above my head but I am by no means ‘fit for work'”, she said.

In February, she was instructed to visit Redditch Job Centre for an interview but shortly into the meeting an assistant told her there was no point continuing it as Natalie was too unwell to work.

Following the meeting, on the advice of job centre staff Natalie reapplied for benefits with depression but recently received a letter turning her down.

Natalie, who has a five year old son named Charlie, is currently undergoing treatment and doctors believe she has developed a second pituitary gland tumour at the base of the brain after recently having one removed.

Her father Thomas, has Parkinson’s disease and dementia, and despite Natalie’s condition she tries to help mother, Cathie, care for her dad but admits the pair “help look after each other”.

Prior to her condition she worked all her life.

She said: “I was raised with good work ethics and from two weeks after leaving school held down a full time job and even attended evening college to train and become a counsellor.”

“I have ambition and can’t wait to be well enough to work but the fact is at the moment I am not capable.”

She is now considering talking her case to tribunal.

A Department for Work and Pensions (DWP) spokesman said: “The decision on whether someone is well enough to work is taken following a thorough independent assessment, including all available evidence provided from the claimant’s GP or medical specialist. Anyone who disagrees with the outcome of their assessment can appeal.”

From http://www.eveshamjournal.co.uk/news/regional/15232560.Single_mother_suffering_from_a_debilitating_rare_disease_judged__fit_to_work_/

 

Nancy (chance), Steroid-Induced Bio

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golden-oldie

 

Originally posted April 18, 2008

I have Iatrogenic Cushings—I also have adrenal insuffiency —One doctor told me to just say I have Addison’s—I have many symptoms of Addison’s but I don’t have the salt issues. I have much empathy for the 52 year old man.

I am 60 and have been on cortico-steroids since 1979—everyday. It has beaten up my body alot-oh–I have steroid dependent asthma–I have essentially been in statis asthmaticus and/or on steroids for 30 years.

My allergist told me I have the twitchiest lungs he has ever seen. I am sharing this because anyone else on steroids for their asthma must have very twitchy lungs too.

I know I am lucky because I have never been on a respirator–Hospitalized yes.

I would like to hear from other folks with steroid dependent asthma or other Cushing’s folks.

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Stephanie (Stephanie), Pituitary Bio

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The pituitary gland

3 years ago, 2014, I was 43 and very active, running, doing HIIT workouts, volunteering, making and doing stuff, traveling like a maniac.

Then I started getting cysts that were benign but required surgery. One was endometriosis and ovarian, the second, lumbar. Which resulted in my having chronic, severe numbness and nerve pain in my left leg. I attributed the severe weight gain to not exercising.

Then I went to the emergency room for a abscessed cyst in my neck. An ENT did a follow up MRI and found a cyst on the pituitary gland late 2015, but I had to move to Fairbanks. early 2016.

Finally, I have a team of an Endocrinologist specializing in Cushing’s and a Neurosurgeon at Swedish in Seattle. I have to travel but it’s worth it because I’m being treated for something.

I had the first transphenoidal surgery in Aug 2016 that removed the bulk of the macroadema, but there was still elevated cortisol and they found some cyst left. Just had the second surgery January 2017 and will be going to post-op appointment soon.

I still have symptoms of Cushing’s Disease, don’t know yet if I actually have elevated cortisol, but I left the hospital with no change in cortisol from admittance to discharge. I looked at the scale today and despite watching my eating have gained weight- I have gained 60 lbs in 3 years! I still have the severe, chronic nerve pain so am on meds, go to p/t and a pain management specialist.

Have had hypothyroidism and take steroids. I go through cycles of good days but mostly bad with sleeping and bathroom problems and unhappy thinking.

I rarely leave the house anymore. I look and feel ugly and disabled – I just got a handicapped placard. I want to volunteer, travel, go outside but then when I try, I get sick and can’t. So I’m trying to find ways to be active at home or on my own time schedule. I do fiber arts at home but for my own sanity- it’s not good enough to sell but I have enough stuff to sell! I’m also an introvert with a social phobia, I don’t have any extended family, and I’m new to this area so have not made any friends! So this is the great challenge of my life, where all my roads have led me to, to which my strength and knowledge must apply and conquer.

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MIranda (Miranda34), Steroid-Induced Cushing’s

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steroids

 

Hi,
I have only recently been diagnosed with Cushing’s syndrome,and it is due to the mediciine i take for asthma.ilast year i kept collapsing in the street and iwas suffering from low blood-pressure and hypoglycemia.

 

I live in france where this illness is practically unheard of. I am on two different medications to treat my illness but have gained a lot of weight,have a ‘camel’s hump’,edema on my legs and feet as well as having a ‘moon-shaped face”. I am British-American and would love to hear other people’s stories of living with this disease.

 

I am exhausted all the time,depressed,can’t concentrate on anything…i have trouble leaving the house because i get dizzy and people stare at me and judge me because i am obese.

 

I came to this website to hear other people’s stories and to feel less alone because Cushing’s syndrome is a nightmare.

Take care!

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