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Toledo man with rare disease shares his story of pain to support others

National Rare Disease Awareness day has prompted Michael Newell to ask others who are suffering to start a support group.

TOLEDO, Ohio — A man living with a rare disease is opening up for the first time about the pain he deals with everyday. 

He wants to spread the word to help others because Saturday is National Rare Disease Awareness Day.

"If you have this disease, your mental health is gonna suffer. And I'm not ashamed to admit mine has. So it went from a physical battle, to a mental battle," said Micheal Newell who has Complex Regional Pain Syndrome. 

A routine hand surgery led to Newell living a life with daily pain. 

"CRPS is a chronic pain condition that often affects a limb, whether it be the upper or lower extremities. And as it progresses can sometimes affect both. It is often caused by an injury whether it's surgery, some sort of accident or something mild like an ankle sprain can sometimes trigger it," said Dr. Sheriff Hefzy, a pain management physician with Mercy Health in Perrysburg. 

Hefzy is not Newell's doctor, but he treats Mercy Health patients with the disease. 

He says it can affect anyone at any age or point in their life. 

For 51-year-old Newell, it's mostly been a constant burning sensation and pain that has stopped him from working or spending time doing his favorite hobbies. 

"I have what's called central sensitization and all my senses are heighten. I really can't go outside anymore which is ironic because I use to work outside in the winter in sub zero temperatures and anyone that knows me, knows cold didn't bother me that much and now I can go from like my house to the car and the car to the store," said Newell. 

Newell believes he hasn't been able to find a solution to his pain because of how rare the disease is. 

The National Organization for Rare disorders recently designated the disease as rare, which means there are fewer than 200-thousand CRPS patients in the U.S. 

"It is not a common condition. But it can happen and if caught early, it can be treated. And the earlier you treat it, the better the outcomes will be," said Hefzy. 

For Newell it hasn't been the best outcome. 

It's why he wants to bring awareness to this type of pain for National Rare disease day on Saturday. 

"You adapt because you have to. And like I say, my shout out mainly is to, to everybody with invisible illnesses or you know diseases that go unnoticed or swept under the rug," said Newell. 

Newell wants to start a support group for people in the area living with CRPS. 

He says you can reach out to him through his email, michealnewell@ymail.com or you can follow him on Instagram

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