A mum has opened up about her debilitating condition which has left her in excruciating pain every day and unable to play with her son.
Kate Mallinson fears she is missing out on her son Samuel's life with the youngster feeling guilty that he can't help his mum.
The 45-year-old has battled unbearable symptoms for the past 14 years where she struggles to hold up her own head due to intense pain.
In June 2022, she was diagnosed with Ehlers-Danlos Syndrome (EDS), a genetic condition that affects the connective tissue and muscles, and she also has scoliosis and Crohn's disease.
She's had to quit her job due to the "horrific" pain and is unable to spend quality time with Samuel, 10, as she is too exhausted.
"I can very rarely run around with him or play any outdoor games and on the occasions I have, I have to stop and vomit," Kate told NeedToKnow.Online.
"On 'proper' bad days, I can't get up to get my son ready for school or take him there and my mum has to come round and do everything for me.
"My husband, Roy, has to pick our son up every day because I can't manage it by that time in the day – I'm truly exhausted.
"Every day is different and I try hard to make a 'good' day for my son when I can and do as many 'mummy' things as possible."
The situation has also affected Kate's son Samuel who said he feels "guilty that I cannot help mummy."
He added: "I try to do things like tidy up and help make tea and look after myself a bit, but it's so sad seeing her in pain all the time.
"Also, not knowing what to do when she is crying. All my life, I've seen mummy in pain and it would really make happy to see her smiling, not crying."
Before falling ill, Kate was working toward achieving her doctorate, as well as being an outgoing, active person.
Now, she experiences frequent dizziness, sickness, shooting head pain, nausea and intense neck and facial pain.
At one point, her jaw dislocated and she's had five surgeries, including a total joint replacement.
She said: "I still get dislocating on the right side of my jaw and have to often 'clunk' this back into place.
"I have a restricted diet, as I have to be careful with how I eat, along with brain fog and numb fingers and toes.
"I have sore ulcers, bowel and bladder weakness, lack of coordination and ultimately, like my brain isn't working.
"I have many days where I have totally run out of strength and there is just no more fight in me to take another breath."
The mum hopes to have craniocervical surgery, which involves fitting a metal brace onto her skull and attaching this to her spine.
While this won't cure her condition, she hopes this will help alleviate her symptoms.
She's hoping to raise £45,000 for the life-changing procedure.
Kate said: "You wouldn't let an animal live in this pain and you can't expect anyone to have this amount where they stop living a life.
"I have to learn to live with EDS and I have accepted that – but this pain is not liveable and it is not an option to continue as I am."
Although there are risks involved with the surgery, such as paralysis and infection, she believes this is her only choice at having a "normal" life once again.
While she awaits surgery, Kate is trying various methods to help with the pain, such as hot and cold presses, medication and wearing a neck brace.
She added: "I have to wear an eye mask at night because my left eye doesn't stay closed after jaw surgery and I have a mouth guard to protect my teeth from breaking, too.
"I am being tortured in my own body and I can do little to alleviate the symptoms – but I try mentally to stay strong and get through the day.
"It's been a rollercoaster of hope and despair and my mental health has deteriorated dramatically.
"Guilt is also a very strong emotion, as not being the mum Samuel deserves or being a good wife is so consuming.
"But I look at my son, and I know I can't give up for him. I hope to be an active part of my family and not watching from the side lines.
"I want enjoy life and it not be one constant existence of getting through each day the best I can without thinking about ending it all.
"I want to see my son grow up and all of his exciting adventures instead of it only going on around me.
"I would do anything for this soul-crushing pain to stop."
