Jordan Adams was told his early onset frontotemporal dementia and Parkinson’s Disease would get worse as he gets older. (Caters)
Chris Parsons, News Editor, Yahoo News UK
‘I’ve got dementia aged 23’: Jordan’s devastating diagnosis after inheriting rare gene from mother. Tue 2 October 2018 at 8:39 am GMT-4
A 23-year-old is believed to be one of the youngest adults in the UK with dementia – after inheriting the gene from his mother. Jordan Adams was told he would develop early onset frontotemporal dementia and Parkinson’s Disease, a condition which will worsen as he gets older.
He inherited a gene which causes the degenerative condition from his mother Geri, who died aged 52. Entrepreneur Jordan, from Redditch, Worcestershire, was given the crushing news that he had a rare mutation of the MAPT gene last month.
While Jordan has no signs of the illness now, doctors have told him he could lose the ability to walk, talk and eat for himself at any time and his life could end in his fifties, as his mum and aunty Ann did.
He now plans to have his sperm screened for the gene so he and girlfriend Lucy Thomas, 21, can start a family before his symptoms develop. Jordan said he saw the full impact of the disease while caring for Geri, as he watched her lose the ability to talk, walk and eventually eat and breathe for herself.
Jordan was given the news he had tested positive for the gene when he and sister Kennedy, 25 decided to get themselves tested after watching beloved mum Geri deteriorate over a period of six years.
Geri Adams with Jordan and Kennedy as youngsters. (Caters)
He was finally given the results on September 12 after three gruelling months of consultations and blood tests. He said: ‘When I was told the diagnosis I was devastated. We had been in the waiting area for what seemed like hours – it was only 10 minutes but it felt like an eternity.
‘As soon as I walked into the room, I knew it wasn’t a positive result – nobody can prepare you for that. ‘If there are no advancements then I’ll have a shorter life than most.
Jordan’s mother Geri died aged 52 after battling dementia for eight years. (Caters)
‘It’s like a death sentence.
‘It’s very hard to explain. We’re all dealt cards in life and I was just incredibly unlucky.’
Jordan’s family first noticed something was wrong with his mum Geri in 2006, when she suddenly began acting out of character, but she was not diagnosed until 2010 before passing away in 2016.
He said their usually compassionate, caring and generous mother ‘slowly got stripped of her communication’, before later losing her mobility and ability to go out alone.
Jordan said that despite his initial shock, he and girlfriend Lucy have discussed their plans for their future together and that he feels like his diagnosis will give him a unique perspective on life.
Jordan, pictured with girlfriend Lucy, said he’s not determined to live life to the full after the devastating diagnosis. (Caters)
They are considering having IVF when they decide to start a family as the process will allow doctors to screen his sperm for the dementia-carrying gene. Jordan said: ‘I feel like the diagnosis is actually a licence to live.”
‘It’ll make me step back and appreciate the bigger picture. It’s going to allow me to make choices to live a fulfilled life. Lucy added: “‘We’ve decided that it’d be probably best to have children first and then get married.
‘We know it’s different to how most people would do it but it’ll give Jordan more time with his kids.
‘It’s hard to deal with knowing he won’t be there one day but it’s important to retain perspective.
‘We will have a life together despite everything.’”
Jordan’s sister Kennedy – who was given the all-clear from having the gene earlier this year – added: “‘He has got time but we just don’t know how much – he has no symptoms yet, but it could start tomorrow.
‘He won’t get it when he’s old and grey, but when he’s young and fit. ‘This disease is hereditary, aggressive, and rare. But Jordan’s been incredible, and he’s not going to let it destroy him.’”
Brothers in their 20s both diagnosed with rare form of dementia
Jordan and Cian Adams, aged 28 and 23 respectively, from Redditch, Worcestershire, have Frontotemporal Dementia, (FTD) a rare type of dementia caused by damage to the nerve cells at the front of the brain.
It mostly affects people under the age of 65 but their symptoms are likely to become symptomatic in their early 40s so could lose their lives within ten years of diagnosis.
‘We won’t stop until £1m raised for dementia cure’ – Redditch brothers
23 Year Old Is Youngest To be Diagnosed With Dementia
World’s Youngest Alzheimer’s Case Diagnosed at 19
Neurologists Report World’s Youngest Alzheimer’s Case
Neurologists at a memory clinic in China have diagnosed a 19-year-old man with Alzheimer’s, making him the youngest person in the world with the condition. According to a recent case study published in the Journal of Alzheimer’s Disease, a 19-year-old male from China who has had memory problems since age 17 was diagnosed with dementia.
Around age 17, the teen started experiencing memory deterioration and had difficulty concentrating on his high school studies. The cognitive decline worsened, and a year later, he started suffering from short-term memory loss.
The patient’s brain imaging revealed memory-related hippocampal shrinkage, and his cerebrospinal fluid suggested usual indicators of this most prevalent type of dementia.
Alzheimer’s is typically considered a disorder of the elderly. However, early-onset instances, which include people under the age of 65, account for up to 10% of all diagnoses.
Pathological gene mutations can explain Alzheimer’s in nearly all patients under 30, classifying them as having familial Alzheimer’s disease (FAD). The younger a person is at the time of diagnosis, the more likely it is due to an inherited defective gene.
When researchers from the Capital Medical University in Beijing analyzed the genome, they found no evidence of any normal mutations that cause early onset of memory loss, nor any problematic genes.
Before this recent diagnosis in China, the youngest Alzheimer’s patient was 21 years old. They had the PSEN1 gene mutation, which causes aberrant proteins to accumulate in the brain, generating toxic plaque clumps, a typical hallmark of Alzheimer’s disease.
The Tests Performed
Doctors working on the case dug deep into the teen’s medical and family history and conducted a series of tests to learn more about his illness. They discovered that he had a normal childhood development and that none of his parents, grandparents, or other relatives had a history of dementia, cognitive impairment, or psychiatric disease.
Doctors ruled out other common causes of cognitive impairment in young people, such as infection, inflammation, intoxication, trauma, abnormal metabolism, and “congenital abnormalities” because the patient had no history of head injuries, psychiatric or psychological disorders, or diseases associated with memory loss.
The teen also undertook MRI and CT scans, blood and urine analysis, cerebrospinal fluid (CSF) analysis, a tau tracer to look for tau tangles, and several neuropsychological tests for memory, mental state, anxiety, dementia, and depression.
His MRI revealed atrophy in the hippocampus—the loss of nerve cells and the connections that enable them to communicate in the brain’s tissues—and his CSF showed abnormal tau buildup.
Also, he performed worse than average on the World Health Organization-University of California, Los Angeles Auditory Verbal Learning Test, indicating a significant memory impairment.
To identify DNA mutations linked to early-onset Alzheimer’s, doctors sequenced the teenager’s and his family members’ genes but found none.
Rare Diagnosis
Alzheimer’s can occur sporadically due to heredity, aging, the environment, or pathogenic gene mutations. Younger people are more likely to have these gene changes, as was the case with the previous youngest Alzheimer’s patient.
As a result, specialists were perplexed by the teen’s diagnosis and the lack of any mutations. They said his instance had changed their knowledge of the average age of the disease onset.
The researchers did not specify what kind of treatment or assistance their young patient will receive, but they stated that they intend to follow up with him in the long term to understand the disease.
The Mysterious Case of The Youngest Person Ever Diagnosed With Alzheimer’s : ScienceAlert
Jordan and Cian Adams, aged 28 and 23 respectively, from Redditch, Worcestershire, have Frontotemporal Dementia, (FTD) a rare type of dementia caused by damage to the nerve cells at the front of the brain.
It mostly affects people under the age of 65 but their symptoms are likely to become symptomatic in their early 40s so could lose their lives within ten years of diagnosis.
Inside the mind of a 19-year-old with Alzheimer’s | MDLinx
References
- Jia, J., Zhang, Y., Shi, Y., Yin, X., Wang, S., Li, Y., Zhao, T., Liu, W., Zhou, A. and Jia, L., 2022. A 19-Year-Old Adolescent with Probable Alzheimer’s Disease. Journal of Alzheimer’s Disease, (Preprint), pp.1-8.
- Agüero, P., Sainz, M.J., Téllez, R., Lorda, I., Ávila, A., García-Ribas, G., Rodríguez, P.P. and Gómez-Tortosa, E., 2021. De novo PS1 mutation (Pro436Gln) in a very early-onset posterior variant of Alzheimer’s disease associated with spasticity: A case report. Journal of Alzheimer’s Disease, 83(3), pp.1011-1016.
- Neurologists Diagnose The Youngest Case of Alzheimer’s Ever Reported. Science Alert. https://www.sciencealert.com/neurologists-diagnose-the-youngest-case-of-alzheimers-ever-reported. Published online: 16th Feb, 23. Accessed: 3rd March, 23.
- 19-year-old becomes youngest ever diagnosed with Alzheimer’s disease. National Post. https://nationalpost.com/health/19-year-old-youngest-ever-with-alzheimers. Published online: 16th Feb, 23. Accessed: 3rd March, 23.
- Teenager in China becomes the youngest person diagnosed with Alzheimer’s disease. CTV News. https://www.ctvnews.ca/health/teenager-in-china-becomes-youngest-person-diagnosed-with-alzheimer-s-disease-1.6281387. Published online: 21st Feb, 23. Accessed: 3rd March, 23.
- A 19-year-old is the youngest person to be diagnosed with Alzheimer’s disease – the cause is a mystery. The Conversation. https://theconversation.com/a-19-year-old-is-the-youngest-person-to-be-diagnosed-with-alzheimers-disease-the-cause-is-a-mystery-200001. Published online: 22nd Feb, 23. Accessed: 3rd March, 23.
- Inside the mind of a 19-year-old with Alzheimer’s | MDLinx
- World’s Youngest Alzheimer’s Case Diagnosed at 19
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- A Song for Alzheimer’s patients – Search
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