Sinking back on the bed exhausted, I smiled. My just-born daughter’s cries filled the room. “How is she?” I murmured, watching my mother cradling my newborn in her arms. When she didn’t answer, a wave of fear crashed over me. What if my baby had inherited our family’s devastating condition?
My two younger sisters – Monisha, now 19 and Savitri, 17 – and I have a rare disorder called Werewolf Syndrome – also known as Hypertrichosis Universalis. We have long dark hair all over our bodies – a condition that left us living as recluses, and wearing head-to-toe tunics if we ever had to go out, to stop strangers pointing or making fun of us. Now I stared at my mother, Anita Sambhaji Raut, who was holding my baby, and waited for her to tell me everything was fine. Silence.
I tried to catch her eye, but she seemed to be avoiding looking at me. “Mother, how is she?” I repeated, nerves jangling through me. “Please. Please tell me that my little girl is OK.”
She raised her eyes to look at me. I noticed they were full of tears. Taking my hand, she said very softly: “She’s like you.’’
Devastated, I burst into tears. “Give her to me,” I said faintly. “I want my daughter.” I held out my arms and gazed at the tiny newborn wrapped in a white sheet. She was already asleep, and looked perfect. Gently, I moved the sheet away from her tiny body and saw that she was covered from head to toe in soft black hair. “Not you too,” I thought, stroking the back of her hand. I could imagine what she would have to go through, how hard her life was going to be. “I’m here for you,” I promised, bending down to kiss her. But would it be enough?
Just like my daughter, I’d been born covered in black hair. So had two of my sisters. My father Sambhaji Laxman Raut, who died in 2007, had also had the genetic condition and had passed it on to us. There was no known cure, and the only solution was using hair removal cream every day. But it wasn’t just the hair that was the problem. Our features were different too – our noses are broad and our faces wide. But Mother always told us how much she loved us – and I would do the same for my little girl. It wouldn’t be easy though. As I grew up, the hair covering me grew longer and coarser. My sisters and I were shunned by our community in Pune, in the western Indian state of Maharashtra.
We used to stay indoors, never going to school or stepping outside to play, fearing the name-calling and laughing. Whenever we went outside – for a check-up to the doctor or to visit our relatives – people used to scream and shout ‘here come the beasts’. “Please mother,’’ I used to beg. “Please don’t send us to school. We can’t bear the taunts.’’ It was easier to remain in the safe surroundings of our family and home.
Luckily we had three other sisters – Swati, 23, Dipali, 21, and Lakshmi, 14 – who are normal. They were always a huge support to us, but they can never fully understand our pain. Mother used to try to protect us when we had to step out by covering us in long tunics with barely our eyes visible. Or she would opt for shortcuts through lanes that were deserted, but as soon as anyone spotted us, they would alert the entire community who would come out to stare or ridicule us.
The doctors told us there are only a few hundred cases in the world of people with Werewolf Syndrome and prescribed hair removal cream. It was a tedious routine – we had to apply the cream almost every day, but it worked well. Nevertheless, my sisters and I were too embarrassed and terrified to ever leave the house.
As the years passed I feared I would never be able to get married and have a family of my own.
“We will find you a good husband,’’ my mother often said, but I didn’t really believe her. After all, I used to think, who would marry me?
But Mother, who was working as a helper in a local health-care centre, promised to find me a good husband after my father died of a heart condition. And eventually she did – Milind Manohar Karande.
His family were friends of some villagers who knew about my condition. His parents accepted it, but I didn’t know if he knew. And as it was an arranged marriage I couldn’t meet Milind, 29, beforehand to tell him about my condition.
We married in May 2012. I couldn’t contain my happiness on my wedding day – it was all I had ever dreamed of. After all, I was starting a new life.
Milind and I didn’t know each other, but we both trusted our parents’ judgment and we had faith in their decisions. I soon found out that Milind was partially sighted, but when he touched my arm he asked why I had such hairy skin.
“It feels different to other people’s,” he said. When I explained my genetic condition he was very understanding. I was overjoyed to have married a man who was so accepting.
I moved in with Milind and his parents in the next town and life soon got into a routine of doing regular household chores and taking care of my husband and in-laws. I was so happy.
But my mother constantly worried about me. She was always texting and calling me. “Are you OK? What are your neighbours like? Has anyone been nasty to you?’’ she would ask. She was terrified my new community would not accept me and would start verbally abusing me.
I was also a little worried that life was going to start emulating my childhood. But thankfully everyone was fine. There were some obvious looks and finger pointing when I stepped out but this was nothing compared to the abuse I had faced as a child.
And, best of all, within just a few months I was pregnant.
“I’m expecting a baby,’’ I told my mother over the phone. “My dreams are finally coming true.’’
But we all knew the truth – there was a big chance that this baby would be born with the same condition.
I prayed daily that she wouldn’t inherit it but there was nothing I could do. I wanted this baby at any cost, and would love her no matter what. There were no tests I could have so I just had to wait – until now.
“Oh little one,’’ I sobbed. “I’m so sorry.” But she was still asleep, unaware of all the emotion swirling around her. “I love you,” I whispered, hugging her.
And although I was initially sad, Shweta was so sweet and easy-going that I loved looking after her and being a mother. Tests done when she was three months old confirmed she had the condition, but my doctor was hopeful there would be a cure eventually. “There isn’t anything now but trials for new medicines are going on. Soon, hopefully a drug will be found,” he assured me.
Shweta is eight months old now, healthy and happy. My husband and my in-laws are extremely understanding and do not blame me for my child’s condition. They knew that there was a chance that she would have it. They love playing with her and carrying her around. My husband says that he will save up enough money to give her the best treatment for the condition. I am blessed to have such a family.
I have accepted her condition – nature has made her and I this way, so I became determined to make her a strong girl. She will need to fight people’s prejudices, but she has a sunny, kind personality.
I love being a mother; I cannot wait to have more children. If they have the same condition we will cope, though I am praying for a miracle that they will be free of the condition.
Seeing the amount of love being showered on my child truly fills my heart. My only dream now is that medicine will be discovered to cure her condition so she will not have to suffer the pain I did while growing up.
