A strange disease causes a woman's body to have thousands of tumors

Charmaine Sahadeo, 42, from Trinidad and Tobago, has struggled with neurofibromatosis type 1 (NF-1). The disease causes tumors to appear on Sahadeo's scalp, mouth, face, limbs, chest, and even her private parts.

Overcome stigma

According to Sahadeo, the tumors began to develop when she was 13 years old. At first, these tumors were small and less painful, so she ignored them. Her mother also has this disease but it is milder. With Sahadeo, the tumors almost completely block the nasal passages, deforming the face and seriously affecting breathing. A large lump in his leg also makes it difficult for Sahadeo to walk. Another tumor growing in his mouth made it difficult for Sahadeo to eat and communicate.

"My illness makes it really difficult for me, especially when curious people come to watch and say all kinds of negative things. It's miserable not being able to go out. I really want to go out and play with my children but I can't. ", Ms. Sahadeo confided her heart.

In his quest for a cure, Sahadeo sought out Ryan Osborne, a head and neck cancer surgeon based in Los Angeles, USA. In preparation for the surgery, Ryan Osborne’s medical team faced a major problem: it was difficult to find a vein for anesthesia because the tumors covered many areas of Sahadeo’s body.

This meant she could not be anesthetized for surgery. In the end, doctors decided to use local anesthesia. Despite the pain, Sahadeo decided to undergo surgery and spent 13 hours on the operating table, conscious.

Sahadeo said she smiles more now. The tumor in his leg was removed so Sahadeo can walk and play with his children.

"It's wonderful. I feel as neat as if I had become a different person. I didn't dare to expect anything better than that. Thank you life, thank you everyone and those who participated in the surgery," Sahadeo said excitedly after the surgery ended.

Some information about neurofibromatosis NF-1

According to the UK's National Organization for Rare Disorders (NORD), neurofibromatosis NF-1 or neurofibromatosis type 1 is a rare genetic condition, affecting about 1 in 3,000 people worldwide. gender. It is also known as "von Recklinghausen" disease, which occurs due to mutations in the body's NF-1 gene.

This gene regulates a protein that plays a role in cell growth and is thought to have a tumor suppressor effect. Tumors that develop can be both cancerous and non-cancerous. In addition to growth, neurofibromatosis can cause an abnormally large head, short stature, heart problems, seizures, and learning disabilities.

Most people with the disease have a normal lifespan. Neurofibromatosis usually appears at birth but it can develop at any age, with tumors growing at different rates. Regarding treatment, there is currently no definitive cure, treatment is only situational, reducing the disease and improving appearance and quality of life.

Treatments may include: surgery to remove tumors and treat bone problems; taking medications to control secondary conditions, such as high blood pressure; physical therapy; psychological support; pain management. Careful monitoring and treatment can help people with NF1 lead a better life.

However, people with this condition are at risk of developing serious health problems, including cancer.

"My illness makes it really difficult for me, especially when curious people come to watch and say all kinds of negative things. It's miserable not being able to go out. I really want to go out and play with my children but I can't. ", Ms. Sahadeo confided her heart.

Most people with the disease have a normal lifespan. Neurofibromatosis usually appears at birth but it can develop at any age, with tumors growing at different rates. Regarding treatment, there is currently no definitive cure, treatment is only situational, reducing the disease and improving appearance and quality of life.