Kriti Mehrotra
With TLC’s ‘Most Extreme Humans’ focusing on individuals with the rarest physical conditions across the globe, we get a deep insight into their daily challenges and complex experiences. Among them is Nusrit “Nelly” Shaheen, who features in an episode titled ‘Skin in the Game,’ underscoring her life with the genetically inherited, severe skin disorder by the name of Harlequin Ichthyosis. According to records, it is congenital and causes the skin to grow ten times faster than normal, developing thick, armor-like scales that make it difficult to manage tissue.
Nusrit “Nelly” Shaheen Chooses Not to be Defined By Harlequin Ichthyosis
When Nusrit “Nelly” Shaheen came into this world on February 9, 1984, she was two months premature and in critical condition due to complications from her congenital Harlequin Ichthyosis. This condition is rare enough that it only affects one in every 300,000 individuals, but arguably the worst part of it is that most of those diagnosed do not make it beyond childhood (3-12 years). In fact, Nelly herself has lost four of her eight siblings to the incurable ailment. According to records, they all passed away when they were just young children.
Despite all the grief in Nelly’s family owing to Harlequin Ichthyosis, she received their unwavering support at every step of the way in life, only for it to push her to keep moving forward. They were told it was a high possibility she would never make it past toddlerhood and then told she might never reach adolescence, but she broke all bounds through sheer determination. She learned at an early age that she needed at least an hour-long bath daily and a lot of lotion to remain hydrated, because if she forgot, her skin could crack, bleed freely, get infected, cause sepsis, and even result in death.
Nelly has thus always maintained a routine, including bi-weekly podiatrist visits for excess skin removal, bi-monthly full-body checkups to manage her condition, and checkups for her limited mobility, vision, and hearing. The entire process is consuming, but she does not mind it because it enables her to lead a relatively comfortable, happy, and independent life, wherein she can embrace new experiences. She actually credits her schooling for this mindset, as she attended a special needs institution from age 7, which taught her that while there are many different people, they are all human and worthy.
Nusrit “Nelly” Shaheen Has Overcome Several Hurdles For Her Inner Peace
Harlequin Ichthyosis, in itself, is a very grueling condition, but it also often accompanies a variety of other medical concerns that can affect one’s expectancy, lifestyle, and standard of living. Among them are growth hormone deficiency, limb difference, and ectropion, a disorder in which one’s eyelids sag and turn outward, making it difficult to blink. Therefore, despite all the significant risks as well as additional worries about her recovery, when Nelly was diagnosed with ectropion at age 19, she underwent surgery to have a graft from her arm transformed into eyelids.
Since then, Nelly has been doing her best to live life to the fullest, admittedly knowing that her time in this world is rather limited and even one bad day could change everything. She even fulfilled her dream of earning a Bachelor’s degree in Business and Sports from Hereward College in the mid-2010s, all in the hopes of becoming a college sports teacher one day. She also volunteered at different sports centers over the years, avoiding those that involve forceful/hard contact because she knows she has to be careful not to fall and graze herself.
However, Nelly’s absolute favorite thing to do is take on new adventures, so she never has any long-term regrets, which is just part of why she went skydiving in 2017 for a charity project. “Having Harlequin doesn’t stop you going out and doing things – they just take a bit more planning,” she told Coventry Telegraph in a candid interview more than a decade ago in 2013. “If you’re organizing a social event, you need to be able to stop and be creamed (lotioned), which takes half an hour. But as long as you plan, you do most of the things you want to do.”
Nusrit “Nelly” Shaheen Has Evolved Into an Advocate For Herself and Her Community
Nelly has long been subjected to public stares and rude remarks because of how she looks, but she claims she is always open to starting conversations to educate people about her condition. It is hence no surprise that she has gradually spread her wings to become an advocate for herself and those like her. For this, she has been part of the Ichthyosis Support Group for over two decades, through which she gives public speeches, helps parents navigate their child’s disorder, and mentors those like her. She is happy to aid her community in whatever way possible.
Nelly is also a professional Play Assistant at a local elementary school near her base in Coventry, England, with the aim of helping children understand that different doesn’t mean bad. She acknowledges on the show that young kids are often the ones most afraid when they see her in public spaces, so she treats her students with patience and shows them she is not that different after all. She essentially leads by example, instilling in them qualities of empathy, kindness, and togetherness. On a more personal level, she is very family-oriented and shares a particularly tight-knit bond with her niece, who has been her rock through everything. It’s also imperative to note that at the age of 42, Nelly is the oldest known living survivor of Harlequin Ichthyosis.
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