Libby Huffer’s Journey with Neurofibromatosis

Just like her mother, Libby Huffer, 45, suffers from a condition known as neurofibromatosis type 1, a genetic disorder that causes non-cancerous growths wherever nerves are present.

Libby Huffer

Living with neurofibromatosis type 1 has been incredibly challenging for Libby Huffer. This genetic disorder has caused her to develop over 6,000 tumors all over her body, leading to relentless bullying throughout her life. People have gone so far as to call her names like “a toad” and “lizard breath.” These hurtful comments have deeply affected her emotionally.

Electrodessication surgery

However, Libby found hope when she decided to start a fundraiser in 2016 to help her undergo a pioneering surgery called electrodessication. The goal was to remove the tumors and prevent them from growing back. Through the incredible support of others, she was able to raise the necessary funds.

In June of the following year, Libby underwent the long-awaited surgery, which successfully removed approximately 1,000 tumors from her face and other parts of her body. While the surgery was a success, it left her with scars that required CO2 laser treatment. Despite all of this, Libby remains positive, acknowledging that there is still a journey of healing ahead of her.

Libby's journey

Libby’s confidence has improved since the surgery. With fewer large tumors on her face, she no longer feels as self-conscious. While occasional stares from children still occur, there has been a significant difference in how she is perceived. Speaking about her experience with pain and bullying, Libby shares, “I have been bullied and victimized my whole life because of the bumps all over my skin, they cover me from head-to-toe.”

Libby opened up about her struggles, bravely asking for support from others to help her regain a sense of normalcy. The chronic pain caused by the tumors has made daily life challenging for her. She feels a constant tingling sensation in the nerves of her feet, making it difficult to sleep. Simple actions like receiving a hug or having water from the shower hit the tumors can cause pain.

Support for Libby

Despite the physical and emotional pain she endures, Libby reminds us that she is just a human being who longs for acceptance and care. She desires genuine conversations instead of uncomfortable stares, as she yearns to be treated like anyone else. And after all that she has been through, the surgery that transformed her life came at a cost of $23,500.

Let’s stand alongside Libby and support her journey by spreading awareness about neurofibromatosis type 1 and the experiences she has faced. Share this article with your family and friends on Facebook, so that together, we can create a more compassionate and understanding world.


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