'Doctors were terrified to touch my giant leaking 'birthmark' that kept growing'
A woman's body goes through a lot of hormonal and physiological changes during the nine months of pregnancy, but some changes are far more unusual than others.
One new mum became concerned and embarrassed when her birthmark started to peculiarly grow and leak from the right side of her face.
Jordan, then 18, noticed the unusual facial growth was swelling, cracking and breaking away from her head, before growing back again and again.
When she finally rushed herself to the emergency doctors, medical professionals were at a complete loss and felt scared to even touch or test her face.
The mum had no clue what was happening to the side of her face (@girlwiththemark/ CATERS NEWS)
The facial growth started to leak and the discharge would smell horrible (@girlwiththemark/ CATERS NEWS)"I spent years hiding my birthmark with my hair because I felt like that was the only way I could experience a normal life," Jordan, from Colorado, US, said.
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"I thought about things most kids don't think of, like if my parents didn't want me, why was I created like this, and will I ever have my own family?
"I eventually started dating and ended up pregnant at 18 with my first child - this is when everything changed for the worse.
"After I gave birth, I noticed my birthmark swelling, cracking and leaking fluids. I could no longer lay on that side due to a discharge that smelt horrible."
Jordan had absolutely no idea what was going on, until one day she "accidentally snatched a big chunk out of her birthmark" and ran to the ER.
"They had no clue what they were looking at - they were scared to touch it, test it, to do anything to it," she said.
It continued to grow with every pregnancy and Jordan started to lose all hope of having a normal life.
"I ended up creating a picking habit - it wouldn't stop growing, so I kept picking it down no matter how bad it hurt or how much it bled," she said.
When she went to hospital, doctors didn't want to touch or test it (@girlwiththemark/ CATERS NEWS)
She was diagnosed with LNSS and finally had the skin lesion removed (@girlwiththemark/ CATERS NEWS)"I discovered a lot of pieces were connected to nerves so I could not go through with my intrusive thoughts which were to just rip it off.
"I was already uncomfortable from the first growth, so the continuous growth made it even worse. I was suffering from multiple infections which made it stink when wet."
Her scab continued to grow until she finally got her diagnosis after four failed freezing removal sessions.
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"They tried testing just the surface of my birthmark and it did not work," Jordan said.
"So they went deeper into the skin, and that's when I got my diagnosis - linear nevus sebaceous syndrome (LNSS).
"I immediately started researching the term because this is the answer I had been wondering about for years.
"But I did what all people do and googled it - I found so many scary things so I stopped reading. I just continued to go to these appointments."
LNSS is a rare genetic disorder that presents as a birthmark until hormonal changes force it to grow. It can be surgically removed by doctors.
After her official diagnosis, Jordan, now 24, was finally able to have the harmless growth removed, which was life-changing.
She now shares her story online to spread a message of self-acceptance, love and hope for anyone in the world suffering with who they are.
"I knew my mission was to help others with rare diseases, facial differences, or body differences, in general, and help them to have the confidence to be accepting of themselves," she said.
"We are the people who feel no one is listening. We are the people who feel lonely in a room full of people.
"We are the people who deserve the same opportunities as everyone else."
She has been inundated with messages of good wishes from followers, but also sadly receives hate from online trolls.
"We deserve to be treated equally, I never imagined going viral over one video and it was very overwhelming," she said.
"I got a lot of negative comments, mainly people bullying me, but also very positive comments, which always outweigh the bad. I have raised awareness to over 10 million people, which is amazing."
Do you have an unusual birthmark? Get in touch. Email [email protected].
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