The household of a affected person with Juvenile Huntington’s illness (JHD), a uncommon genetic illness that causes progressive neurodegeneration, donated his mind to NIMHANS for analysis on Monday.
The docs stated, “That is the primary case of JHD mind donation on the institute.”
Final yr, NIMHANS Mind Financial institution acquired its first mind donation from an grownup affected person with Huntington’s illness (HD). Researchers on the institute have already begun finding out the specimen.
The deceased Jagadeesha hailed from Kalagotra village in Yemiganur mandal in Andhra Pradesh’s Kurnool district. He began displaying early signs of JHD in 2014, at age 12, together with studying difficulties and behavioral adjustments. He was first evaluated in NIMHANS in 2017.
Anita Mahadevan, professor and head and coordinator of neuropathology at NIMHANS Mind Financial institution, stated a group from the institute visited the village and the mind was harvested (inside 24 hours after dying) at a authorities facility there.
What’s Huntington’s illness?
Huntington’s illness is a genetic illness that impacts motion, considering, and temper. There’s at the moment no treatment because it worsens over time, however there are therapies that may ease the signs.
It’s brought on by genes which have been altered by one of many mother and father being handed on to the kid. Modifications in genes trigger injury to sure areas of the mind. This impacts your motion, reminiscence, and considering.
Signs of Huntington’s illness normally start in adults between the ages of 30 and 50, however can happen at any age. Signs embrace problem concentrating or planning duties, reminiscence issues, low temper, despair or anxiousness, adjustments in habits or persona resembling turning into irritable or impulsive, small twitching or jerking actions known as chorea, and turning into clumsy and having problem controlling muscular tissues. These signs regularly worsen over a number of years.
The objective of therapy is to handle your signs and show you how to stay comfy and impartial for so long as attainable.
Supply: NHS England
act of generosity
“It is a great act of generosity by the household. This JHD mind is the primary of its variety within the nation and is a valuable reward of hope for researchers finding out neurodegenerative ailments. It is going to be dissected and frozen at -86 levels Celsius for analysis,” she stated.
Dr Mahadevan identified that because of the consciousness and efforts of docs, extra households of sufferers with neurodegenerative ailments have come ahead to donate their brains. “General mind donation numbers have elevated this yr, with greater than 450 specimens at the moment in our financial institution,” she stated.
“It is very important research the structural and molecular adjustments within the brains of JHD sufferers and the way they differ from age-matched regular brains,” stated Meera Purushottam, chief scientific officer at NIMHANS Institute of Molecular Genetics.
HD for adolescents and adults
HD in adolescents differs from HD in adults in each biology and medical presentation. “JHD sufferers sometimes have greater than 60 CAG (cytosine-adenine-guanine) repeats of their genes. The extra repeats there are, the sooner the onset of the illness and the quicker the illness progresses,” Dr. Purushottam defined.
Nikhil Ratna, co-founder and vp of Huntington’s Illness Society of India (HDSI) and an HD researcher, stated he witnessed Jagadeesha as a resident at NIMHANS in 2017 and has been following his case ever since.
“Over time, his situation worsened, inflicting stiffness, restricted motion, and problem with eye actions, speech and swallowing. Lately, he grew to become bedridden, developed extreme epilepsy, and suffered repeated falls that led to move accidents that led to his premature dying on Sunday (November 2, 2025),” he stated.
household plight
Huntington’s illness is an adult-onset genetic neurodegenerative dysfunction that sometimes presents with involuntary actions generally known as chorea. In uncommon instances like Jagadeesha, the illness develops earlier than the age of 20 and is classed as juvenile HD. It has distinctive signs, progresses quickly, and follows completely different illness mechanisms.
“Jagadeesha inherited the mutation from his father, who confirmed signs in his 30s. His sister was additionally recognized at age 18. The size of the CAG repeat growth determines the age of onset, and the longer the growth, the sooner and extra extreme the illness. JHD accounts for about 6% of all HD instances and stays poorly understood,” Dr. Ratna defined.
HDSI president Venkateswara Rao Kaushik, who coordinated the donation together with Dr Mahadevan and Dr Ratna, stated the affiliation is urging the federal government to acknowledge HD as a uncommon illness.
“Caregivers are going through an enormous burden. Sufferers require multidisciplinary and palliative care at superior phases. Devoted facilities with specialists underneath one roof must be arrange like in Western nations,” stated Kaushik, whose spouse is bedridden with HD.
issued – November 4, 2025 8:18am IST
