A woman whose puberty ‘pimple’ turned out to be a permanent blood clot on her face that has continued to grow for 19 years has spoken out on the impact it has had on her life.
Hope Schiefer was later diagnosed with a hemangioma – a rare vascular growth involving the blood vessels in her face, which is akin to a large blood clot.
The 32-year-old has named the growth ‘Betty’, and fascinatingly she can feel a pulse – which is something visible – through it, and has also noticed it ‘migrate’ further down her face.
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Removing the “throbbing” growth carries serious risks as it is attached to a major vein, so mum-of-one Hope has opted against surgery – despite struggling with her appearance, bullying throughout her teens, and cruel comments comparing her to Quagmire from Family Guy.
Now, she is reclaiming her story.
“After spending so many years viewing the tumour as a weakness or flaw, I wanted to give her a name that represented strength – I chose the name Betty because it sounded powerful to me,” Hope, a cleaning technician from College Station, Texas, US, told Need To Know.
“Betty reflects everything I have survived – the medical procedures, physical discomfort, bullying, and years of struggling with my self-worth.
“She is visible evidence of my strength and a reminder that I am still here.
“Naming Betty gave me a way to reclaim some control over something that had controlled my self-image for years.
“Instead of describing her only as this frightening tumour or flaw on my face, I could talk about her with personality and even humour.”
‘Betty’ first appeared when Hope was 13 and going through puberty.
She said: “I didn’t actually notice Betty myself – someone at church pointed her out during one of our classes.
“At first, it appeared to be a lump on my face.
“I initially thought it was a cyst or a particularly bad pimple, so I tried squeezing it.
“Nothing happened, and it became clear that it wasn’t an ordinary spot.”
She went to the doctor and was referred to a vascular surgeon for further investigation.
There, she was told it was a form of deep vein thrombosis, called a hemangioma.
Hope said: “I didn’t fully understand what it would mean for my future.
“At that age, I hoped the doctors could treat it and that life would return to normal.
“It was only as Betty continued to grow – and other people began acting cruelly toward my appearance – that I understood it wasn’t going to be a simple medical issue.
“It would affect my physical comfort, self-image, mental health, and the way people treated me.”
Over the years that followed, she underwent MRI, CT and targeted ultrasound scans to see how closely it was connected to important blood vessels in her face.
Hope also underwent procedures to guide medication through the blood vessels towards the hemangioma – with a goal of blocking or reducing its blood supply.
But ‘Betty’ continued to grow and swell, and doctors have since told Hope that attempting further surgery would carry serious risks, given Betty’s attachment to a major vein in her face.
As a single parent, it’s a risk Hope won’t take.
She said: “As much as I struggle with how I look, I’m a mother and my son needs me alive and present far more than he needs me to have a conventionally ‘perfect’ face.
“Betty changes from day to day.
“I’m unsure if it’s still growing or just changing, since it has moved from one isolated location to down my neck and under the chin.
“It’s affected by blood, and blood is continuously flowing, so it’s hard to tell.
“During my time of the month, it is larger and more tender due to blood flowing faster throughout my body.
“Some days, it throbs continuously.
“Overall, the area feels heavy and tender.
“I can feel the blood flowing through it, and at times the pulsing is visibly noticeable.
“You can physically feel blood flowing through Betty.
“After I gave birth to my son, Betty migrated farther down toward my neck and became more prominent.
“The blood flow in that area can also be seen.
“Some days are physically more uncomfortable than others, but the heaviness and tenderness are part of my everyday life.”
Sadly, Hope has been subject to cruel taunts and bullying since ‘Betty’ became a part of her.
She said: “People have stared, whispered, commented on my face and made me feel as though I was constantly being watched and judged.
“As a teenager, I began skipping school, pretending to be sick, and acting out because I did not want to face another day of humiliation.
“The cruelty did not completely end when I became an adult.
“On social media, strangers have made “giggity” comments [referring to Family Guy’s Quagmire], created or shared hateful memes, insulted my appearance, and even told me to kill myself.
“It made me feel worthless.
“I went from being a fun, wildly free girl to someone who wanted to hide.
“The bullying did not simply hurt my feelings – it changed the way I saw myself and stole years of confidence and happiness from me.
“The fact that I am still here, sharing my story and raising my son, means those people did not win.
“I know my appearance may continue to change, and there might not be anything I can do to prevent it.
“That frightens me, but I no longer want fear to keep me from living.
“I want to be here for my son and experience a full life with him.
“Learning to make peace with Betty has taken many years, and it is still an ongoing process. “Acceptance does not mean I suddenly love every aspect of my appearance or that cruel comments no longer hurt.
“It means I am learning that my appearance does not determine whether I deserve love, dignity, happiness, or a full life.
“For a long time, I wondered why this happened to me.
“Now I think about what my story can teach my son and other people – that a flaw that is visible does not make someone less deserving of love.
“Looking different, thinking differently, or moving through the world differently does not reduce your worth.”
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