Meet Rukshana Ilahi
Name: Rukshana Ilahi
Occupation: Director of Special Education, National Heritage Academies
Location: Grand Rapids, MI
Skin Condition: Lamellar Ichthyosis
I feel like people with skin conditions often have a one-line explanation that they use to explain their skin condition to others. Tell us yours.
Working with kids who often do not have a filter, I get this question a lot. My go to line - ‘I was born this way.’ When people want to know more, I explain that my skin grows faster than other people's.
What are you up to in life right now?
2018 was my year! In the past year, I beat cancer (no more treatments!), graduated with my second masters degree, and was promoted to a position I wasn't always convinced I could do. I am very passionate about my work and have used my personal life experiences to help shape that. Having grown up with ichthyosis as well as having a sister with a severe cognitive disability has allowed me to be the best in my role. I work to develop people and allow them to see that differences doesn't not mean disability. All people can overcome with the right resources and supports.
You were diagnosed with breast cancer two years ago. What was it like to manage your ichthyosis while undergoing cancer treatment? Did it change your skin? If so, how?
When I was first diagnosed with breast cancer, I thought, ‘Well jeez, I have a life long skin condition—I can most certainly get through the next year.’ In some ways it felt strange to have so much support offered to me because of the cancer diagnosis and treatment. For that I was thankful, but in turn it made me wish there was more support and awareness for how a skin condition can affect one's day to day life and development. Managing my ichthyosis during this time came with both good and not-so-good effects. In some ways my skin was actually clearer. However I had a really bad reaction to one form of chemo that resulted in a terrible rash. This rash left me sensitive to any touch and was terribly painful. Because my skin condition is so rare there didn't seem to be anyone that had any explanation as to why my body was reacting that way. There weren't any medical journals or research that had been done. So because of the severity of the rash and the complexity of my medical make up, they stopped the chemo early. We were left to hope that my body had enough to fight off the cancer cells and move on to the next step in my treatment; radiation. Radiation was equally tough on my skin. The reactions that most experience towards the end of treatment, such as blistering and swelling, developed about half way through. There was not the option of stopping treatment early as with chemo. Nevertheless I persevered and I can say that this whole experience is now behind me. I am officially cancer free, have a head full of hair that I can actually style and I'm feeling like I'm back to normal.
Sometimes, when my health problems stack up, I feel betrayed by body—like it's an unreliable machine. Did the combination of ichthyosis and cancer change how you thought about your body?
I'm not going to lie, it feels like my body had often betrayed me. It's in moments like this that I try to reframe my experience and remember what I have to be thankful for. I am also reminded that my strength can provide strength for others.
What wisdom did you gain from that time, and what advice do you have for people who are going through serious health problems on top of whatever's happening with their skin?
I have always believed in finding the good in things. As a person with a skin disorder, I believe that I have developed a strength that most don't possess. Having ichthyosis has also given me personal perspective in what it's like to live with any sort of difference. Empathy is not a skill that comes easy for most and I believe that my cancer diagnosis (and many other things) has only made it easier for me to be compassionate with others. It had also turned my compassion into advocacy and wanting others to learn to fight for their needs and rights.