Helen and her husband Antony had been a happily married couple for decades. Together, they had three beautiful children: 13-year-old Olivia, nine-year-old Harry, 9, and five-year-old Ashleigh. In her younger days, Helen was a pretty young woman whose burgeoning modeling career lay ahead of her.
She did indeed work as a model for some time, but as at home as she was in front of the camera, life had different plans for Helen. She was married, had children, and worked as a beautician for a time. She even owned a nightclub. Then one day fate decided to intervene with something that she never could have expected…
It began before the children, before the nightclub, and the beautician business. It started when Helen was 19 years old and it left her career, and ultimately her life, in tatters. Helen’s dreams of a life of glamour would be replaced with a life of pain and suffering. It all began with a strange illness…
The path that her mysterious condition has taken has been a rough one. Indeed when the random muscle spasms and locking limbs first began, she had no idea what it might be. It took her five years before a doctor could even get her a reasonable diagnosis. When she was 24, after years of suffering and uncertainty, she was told what was wrong…
Stiff Person Syndrome
Helen had contracted something called Stiff Person Syndrome, an extremely rare disease that gets worse over time. Stiff Person Syndrome causes a person’s muscles to stiffen and go into painful spasms based on triggers. It’s technically a neurological disorder that acts very similar to an autoimmune disease. This means it can’t be treated easily.
When it Hits
If left untreated, Helen’s muscles, mostly the ones in her torso and limbs, will slowly stiffen over time until she becomes completely unable to move on her own. Though not many understand what causes it, the condition is often triggered by a period of emotional stress. It commonly hits in a person’s 40s, but Helen was not so lucky…
Those who suffer from Stiff Person Syndrome can also experience a heightened sensitivity to certain stimuli. Things like loud, jarring noise, touch, and emotional distress, can all trigger muscle spasms. It was during her modeling days that Helen first noticed the triggers, when a light, bang, or unusual noise might make her spasm.
As far as she is concerned, the devastating disease, which she has suffered from for almost two decades, is slowly transforming her into a human statue. It’s a one-in-a-million illness that has left the former model struggling to walk, and even speak. Not to mention the constant pain she is in because of the spasms. Of course, it is treatable, to a point…
Pills a’ Plenty
There is no cure for the disease at at this time, but it can be managed with medication: a lot of medication. Every day, in order to stop the seemingly random spasms, Helen must take a veritable concoction of pills. The same amount of pills that people with liver disease or cancer might have to take.
Hele has described what it feels like to suffer from this rare condition. “I have up to 10 spasms in the space of 20 minutes every single day. My life now is far from the glamorous days of modelling and looking my best…” She’s even shared a frightening experience she had whilst she was pregnant….
“One time I was walking down the road when I was pregnant, and I had a spasm and fell to the floor feeling frozen.” She eventually got back up, but the psychological toll the condition is having on her is beginning to take affect her everyday demeanor as well. “It is so draining. It’s hard to stay positive but I will try for my kids.” she says.
Helen, like most who suffer with Stiff Person Syndrome, is running out of time. If her body continues to stiffen as it is, she will likely die an early age. When she realized this, she had to decide if she was going to let it just consume her, or keep fighting to find a cure. She chose the latter…
Stiff Person Syndrome affects twice as many women as men. Like other autoimmune type diseases, diabetes, thyroditis, and vitiligo, it seems to come from somewhere within our DNA. What little research has been done on Stiff Person Syndrome, seems to link it to a disconnection or autoimmune response in the brain and spinal cord.
Like most of those other similar maladies, the secret to the eventual cure seems to lie in stem cell research. Unfortunately, due to the controversial nature of such treatment, Helen Rowley, like so many others, is currently awaiting a stem cell transplant. It’s a long road though, and she may not have the time…
For those of you who don’t know, Stem cell research applies to the use of stem cells to treatment neurodegenerative diseases and conditions such as diabetes, heart disease, and rare conditions like the one Helen suffers from. Of course, the cells are cultured from embryonic stem cells, so there is a fair bit of controversy related to abortion politics.
Controversial or no, people like Helen have very little choice when it comes to their options. In her case, it’s either she succumb to the disease and becomes a painful living statue, or finds someone able to give her a chance by using stem cells. In the meantime, she has started to raise awareness of the disease and treatments…
One Rough Life
“Every day I wake up and question why I am even on earth,” she explains through tears. “This horrible illness is slowly turning me into a statue. On the outside I might look okay but on the inside I am in agony.” The coming stem cell operation is going slow and if it doesn’t happen soon, she may have to resort to desperate measures.
Helen says that if the operation doesn’t happen in time, she’s going to travel from her home in England to Switzerland for assistance of a different kind. She says that if she has to, she will end her life at an assisted suicide clinic before the disease consumes her entirely. “This condition is going to completely take over my body…I want to die with at least my dignity…”
She knows the stem cells are her only real hope and Helen prays that they will give her more time: time to watch her children grow, to see them bring grandchildren into the world. She says she will continue to fight, regardless of the uncertainty: for her kids, if for nothing else. But everyone has their breaking point.
Live Your Life
There are some people out there who would call her selfish for even considering the suicide route, but it seems an unfair thing considering what she is going through. Ultimately though, she wants her story to inspire people to live their lives to the fullest and never take anything, even the good working order of one’s own body, for granted.
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