Rare disease strips Houghton Regis mum of her senses

A fundraising page has been set up for a mum from Houghton Regis who has an extremely rare disease.

Wednesday, 6th March 2019, 6:00 am

Leanne Henzel, 30, was diagnosed with Paraneoplastic Neurologic Syndrome (PNS) last year, a very rare illness caused by cancer in the body.

There is only one other known case in the UK. She also has a rare antibody called Anti HU, the only known case in the UK.

She has lost her hearing and suffers with seizures and struggles to walk.

Leanne with Jonathan and their daughters, two-year-old Aoifè and eight-year-old Isabelle
Leanne with Jonathan and their daughters, two-year-old Aoifè and eight-year-old Isabelle

Claire Lewis, a close family friend, has set up the fundraising page to help Leanne, her two daughters aged eight and two, and her husband Jonathan.

She said: “Leanne is a close friend of mine and she wants to raise awareness of her condition, in the hope that someone, somewhere may have the same disease and the same antibody so the doctors can have an insight into what treatment they can give her.

“When she was 25 she was diagnosed with lupus and vasculitis, an auto immune disease.

“In 2016 she had a tumour in her nose which was removed a year later, it was after that the antibody began to attack her brain, things slowly got worse from there.


“Leanne is now deaf, has lost her sense of smell and taste and has seizures while she is awake, she also suffers with memory loss and poor balance, she falls and hurts herself daily after a small task such as walking to the toilet. She now has to use a wheelchair, she can walk from the living room to the kitchen but then has to sit down.

“Before this disease she led a normal life and was the manager of a local nursery, her life was like everyone else’s. The nursery has been amazing and they have been fundraising for her, they have been really supportive.

“She is being treated at Addenbrookes, they have diagnosed her with having some sort of cancer but they can’t find it on any scans.

“At the moment a treatment plan is just to try and get the seizures under control to stop any further damage to her brain.

“As the illness is so rare there was no further treatment currently but they are taking advice from other consultants at other hospitals and meeting regularly about her, trying to find someone that has the same antibody or disease.”

The money from the fundraising page, which has already raised over £4,000, is to help Leanne and Jonathan adapt their home in Houghton Regis, they need a stair lift and a wet room.

They have already been able to buy an electric wheelchair which helps Leanne move around the house.

Claire added: “We have set up a fundraising page to support the family and help her with things she needs, we want to make a wet room for her as she can no longer use the bathroom.

“They have three floors and she is on the third floor as that’s where the family bathroom is, we are hoping to get a stair lift put in to make it easier for her, as she struggles with the stairs. We have had quite a few local businesses get on board and managed to get an electric wheelchair for her.

“Her husband is doing an amazing job, he is working full time, taking care of the girls and their routines, taking care of Leanne and making sure she gets her medication and doing all the shopping and housework. It’s a lot for him and he is doing an amazing job.”

Leanne has received support from Vasculitis UK since her PNS diagnosis, the charity helps those suffering from vasculitis diseases and their families by providing information and advice.

Claire has had 1200 wristbands designed for Leanne, they are £1 and can be purchased though the Facebook page.

Leanne wants to raise awareness of her rare disease, to follow her blog go to: www.facebook.com/Leannes-Story-341538733117054/ or to make a donation to her fundraising page visit: www.gofundme.com/6s4x9ts?member=1568156.