Santa Lucy Fungaro has dealt with dermatomyositis, a skin condition which presents with muscle weakness and skin rash, since she was 5 years old. The experience has left her with not just physical, but also emotional scars from bullying from colleagues and teachers at school. However, the student of Social Works & Social Administration chose to wear her scars with pride and live her life in colour. On Twitter she refers to herself as “Boss Bae”, which in full is ‘Born Out of Self Sustenance Before Anything Else.’ She’s using every platform she gets to advocate for a world free of hate and bullying, as she also fundraises to travel to Nairobi for treatment.
What does change mean to you?
Change means everyone living in the peace of themselves, it means dignity for everyone. Change means love. Change means progress. Change means happiness for everyone, with no hate, lots of love, and a better tomorrow.
At what point did you choose to become an advocate for change?
Well that was at the beginning of last year, someone said something so mean to me. The person called me ‘contagious’ and I looked at myself and said, “Do I really deserve this?” I felt like I was being misunderstood because of these scars. I felt like I didn’t fit in, so I decided to come out, share my story and tell the world: “Yes, I have scars, but these scars don’t define me. They are just a badge, a mark, a crown – a reminder that I defeated death at one point and I came out victorious.”
These scars don’t define me. They are just a badge, a mark, a crown – a reminder that I defeated death at one point and I came out victorious!
Santa Lucy Fungaro
Your experience living with dermatomyositis, how much impact has it had on you?
It started when I was aged 5, that was in 2005, and I was first diagnosed in that same year. Growing up, my doctors made me understand that I was the only one with it. My family was so loving and supportive; my parents, aunties, uncles and cousins. Going through school, was hard, because people would look at me differently. I felt like I was just forging my way through life.
I didn’t enjoy my childhood. I didn’t have the fun that my peers had growing up, I was always kept in the dark. Yes, I would try to shine sometimes in activities like debate, but then there was always this thing of ‘will they still accept me for who I am?’ And as time went on, the stigma became so real. But being the Santa that I am, having the kind of family that I have, I literally decided to ignore everything, put aside the pain and decided to live my life in colour. I had my family, I had a few friends who cared about me. I had some fake friends too who encouraged me to be stronger because they’d laugh with me but talk behind my back. Some would even call me names like ‘Masila’ (pus), ‘ Animal Print’ and I didn’t care. It would hurt, but I didn’t care because it is life.
You once said that when found out that you were the second registered person with this condition in Uganda, you felt like a celebrity. Where do you draw this kind of courage to make such a terrifying fact humorous?
There are people who have very small things and they can’t step out in the morning, someone has a rash or a pimple and they can’t step out of the housen, but here I am with millions of scars on my face, my hands and knees. But I step out feeling like the best thing that has ever happened to the world. So, I feel like a celebrity because since 1952 – 2005 there was no new registered case in Uganda. Till today, I don’t know if there are more cases, but for sure I don’t know. but if there is none, I still feel like a celebrity, because no one has this. I wake up every morning and tell myself “Santa you can do this, slay in that outfit, be happy.”
Someone has a rash or a pimple but they can’t step out of the house, but here I am with millions of scars on my face, my hands, my knees. But I step out feeling like the best thing that has ever happened to the world!
Santa Lucy Fungaro
How did you deal with the bullying?
It would hurt at first, I would cry… but cry in the dark and smile in public. Very many times people say things to my face in public, like someone will walk up to me and tell me the nastiest things when people are listening, but I’ll smile and walk away. Over the years I’ve learned to be strong because I know this is pain that I feel but cannot touch, neither can I explain it in detail, so, I’ve built walls around myself which are like a protective gear. There is no bullet that comes my way that I can’t deal with.
As an advocate for change, what are some of misconceptions people have about dermatomyositis?
Some of the misconceptions include thinking it is contagious, but no, dermatomyositis is not contagious! It is actually not a disease, but a condition. Secondly people think it’s genetic, but it’s not. I’m the only with it in my bloodline, and I cannot pass it on to my children. The other misconception people have about me as an individual is; people think I’m proud. I’m not, but I only sit at tables where I’m invited because I got tired of the hate and the pain, so I decided to be me and use that time for me. That’s why I call myself the “Boss Bae”, Born Out of Self Sustenance Before Anything Else. it is me. So, I’m not a proud girl, I’m very down to earth, I just want my peace because I’ve always been left out, invisible, and it kind of stuck with me over the years.
People think I’m proud. I’m not, but I only sit at tables where I’m invited because I got tired of the hate and the pain!
Santa Lucy Fungaro
You have received lots of support on social media. Does this have anything to do with the kind of change you are advocating for?
Yes, I think it is, because when I first came out to share my story, I didn’t know how people would take it. It was hard. I remember going to sit in front of cameras and I’m like, is this what I want? but then deep down it’s what I wanted, and I decided to share my story and people saw the light in it. I wasn’t seeking pity, no! I just wanted the world to know we people with autoimmune conditions have stories to tell, we go through a lot in life, we just need support and love. We didn’t ask for this. we are just living lives. Yes, the support from social media has honestly been so amazing.
There has been a lot of support, yes, like 98% support then 2% trolls. But the trolls are only 2 people! One person came out when I was doing a campaign for my treatment in Nairobi and this person said I’m just accepting money, I’m a fraudster, and I told him thank you, you only know pain when it is inflicted on you, but for now let me keep being the ‘fraudster’ that I am.
Someone else kept on saying I wasn’t the only one, he knows people that have the same condition, I told him, if there is someone else, I haven’t yet heard of, but I won’t hesitate to join them. But for now, I don’t know and I do not want to assume, because when you give wrong information, you end up a liar. I wanted to stick to the facts I know.
I thank everyone who has been there for me. All those that have sent me love, those that have supported me emotionally, psychologically, physically, spiritually. I’m so humbled. I pray God continues blessing you, and I’ll keep on being the change that you want to see, because I believe I have not yet gotten there, and I will get there, and put an end to the stigma, although it takes joint effort to get there. One individual cannot stand up for everyone! We need everyone.
Now that there’s hope that the change you’re advocating for is coming, what kind of world would you want to your children to live in?
I’d like my children to live in a better world. I didn’t have the best childhood, and I’d want to give my children the best. That’s why I got tired of the stigma and I reached a point where I realised, if I kept on being in the shadows of everyone, what kind of mother would I make? So I decided to come out, and by the time I have the kids they should look at their mom, if these scars don’t go, and if I fail to raise the money for treatment, they should be proud to say, “That is my mother. My mother is this way, my mother is Santa Lucy with the scars. “My mother is this person who has fought for the rights of many.” I want them to have everything that I haven’t had, I want to give them the best and I want them to know that everyone else is equal and they are all made in God’s image, no matter what condition they are facing. Whether blind, or deaf or whatever. It is all the same, love each other and embrace the different people God put in your life. At the end of the day you don’t know who is going to change your life. I want to be a role model, not only to my children, but also to the other kids out there.
You’re fundraising for money to get specialized treatment, will this reverse the condition?
It cannot be completely treated, according to what I have read, but when I came out to share my story, I contacted the Micyatis Centre in Canada and looking at the pictures I sent them, they told me my calcinosis is still so low, my skin can still go back to normal, only if I’m put on the right medication. They told me I stand an 80% chance, I don’t want to look at the 20% because negatives don’t move me.
I believe the Santa of today is going to be history, and there is a Santa that is meant to be there for tomorrow. So if I’m able to raise the money to go to Nairobi, I am sure, not 100%, but I’ll go with the 80% the doctors gave me – I’m sure because I serve a living God, and miracles do happen. My condition can be treated because I have the faith, and I believe in the doctors there.
You recently took to Twitter to share that you have started a cake business. Tell us about it?
Well, the cake business is dubbed Sarema Bakery, Sarema is an acronym for my name, my little sisters names. We deal in cakes, and is meant to raise money for my treatment as well, because I won’t rely on handouts. I decided to do something like baking. I braid hair too, (in fact I did these braids myself), and I call my studio, Studio 88, I work with friends.
You’re really taking an unstoppable stance. What else are you looking forward to doing with your life?
I’m look forward to doing a lot of things. I’m studying Social Work and Social Administration, and I can do many other things outside my course. I bake, I write, I am looking into going into media, I believe I can be made for the screen. I also believe I have a voice for radio. I believe I can be on magazine covers, because I know I have scars, and yes there maybe people out there who might want to look at me and draw inspiration. So, I’m looking at doing that and more. being an activist for change against stigma, going into schools and talking to kids to build their self-esteem, that is why I started the Santa Lucy Initiative, but then COVID happened, so we didn’t get to go into many schools. I was only in Rotary Clubs.
What’s the Santa Lucy Initiative?
The Santa Lucy Initiative was started early this year, and it started with the Rotary club of Kitante, where they came up with the name to help raise money for my treatment, but the fundraiser didn’t kick off because of COVID-19, so it was called the Santa Lucy Initiative because we believed in the power of 500shs. We were going to go to schools, and form clubs. I was going to be the first person they begin with; 500shs from every kid would cause a change, but then we would continue and have every school maybe, adopt a child from the cancer unit whose bills they’d help pay. That is what I was looking at, but COVID happened, and I decided to think far ahead.
I started the power of 10K campaign on Twitter, that raised 10.2M in the space of 1 week. Then we got stuck, I think people didn’t have the money and I didn’t want to push, but here we are now!
I’m looking at being a CEO as well. I also want to have an orphanage. I basically want to be that ray of hope, that lights in the dark tunnels, so that people will look at and be like; if Santa did it, if she overcame the hate, if the pain changed her life, then so can I.
I basically want to be that ray of hope, that lights in the dark tunnels, so that people will look at and be like; if Santa did it, if she overcame the hate, if the pain changed her life, then so can I.
Santa Lucy Fungaro
You must have a strong support system around you..
I grew up around church, and I found solace in God, and over the years I cry and pray and he doesn’t disappoint. My family; thank you Mummy, thank you Daddy. You people have been like the best thing that I could ever ask for. My sisters too. I have had some teachers that have been there for me. A few teachers, then there have been those teachers who have been really mean – I thank them also. In my S6 there was a teacher who groomed me to grow stronger, she called me a lot of names simply because I didn’t want to be in the dark any more. My friends, my sister, my cousin, have been the best. So many people have been there for me, I can’t thank them enough.
To support Lucy’s #Powerof10k campaign
This interview has been edited and condensed.
Photographed by Mark Bwiire of Soul Image Art
Styling – Kai’s Divo Collection
Makeup by Adrian Kamara of Makeup by Kamara
Hair and lashes by Sina of Natna Natural Hair
Creative Direction by Sam Isingoma
This story is part of ‘Woman of the Month’, a series celebrating women who are brave in their stance, a collaboration between Kai’s Divo Collection, Sam Isingoma,Makeup by Kamara, Natna Natural Hair, Satisfashion UG and Soul Image Art.
