From talking to other mums who are dealing with Incontinentia Pigmenti, I notice that most of us have something in common and that one thing would be that one of the first things we came across explaining what Incontinentia Pigmenti was, was a video done by a young lady called Emily Batista. The video tells us of her life dealing with IP. Now I have a very special treat for you all. I have had the pleasure of speaking with Emily and she agreed to talk with me and answer some questions and give us a little more insight into dealing with IP, so sit back and enjoy.
Tell me a little about your self? My name is Emily Batista, and I’m 20 years old. I’m currently living at home in Brooklyn,NY. I’m attending community college and have an internship with Reel Works (NPO for student film makers), peer mentoring students with film making. What was it like growing up with ip , when did you realise you was different then the rest of the children around you. What kind of an impact did it have? I realised i was different half way through elementary school. I noticed that the jokes kids were making, were about me. My confidence spiralled down and i found myself really unhappy with my appearance and overall being. I didn’t have the courage to speak up for myself, and that allowed kids to keep teasing me. This had a huge impact on me i started doing things to just fit in but luckily by the time i was in 7th-8th grade, i had made friends being myself and also had a flipper that really helped me gain my self-confidence back. Were your parents honest with you diagnosed or did they hesitate to let you know.? My parents were honest with me, they told me from a young age that i had a skin condition that made me special. My whole family really did a great job raising me and showing me love.
Has incontinentia pigmenti stopped you doing things as you were growing up or were you determined to do what you wanted to do and not let it get in the way. ? I don’t recall IP every really stopping me from doing anything i wanted to do. I struggled in school sometimes especially with English, and later was diagnosed with dyslexia.
From your experience growing up if you decide to have children of your own what will your approach be to help them be comfortable in their skin?
If i decide I want to have a child and they do have IP or any other condition that makes them “different” i wouldn’t hide it from them. I would shower them with love and tell them that it might get hard but let them know that I’m there for them. As they get older i would give them advice or tell them stories of when i was there age.
What kind of advice do you give to mothers so they can prepare their children to deal with others who don’t understand incontinentia pigmenti and who might make fun of them.?
My first advice is to tell your children to stand up for themselves and give them examples of nice ways to tell someone “stop bullying me”, or to ignore those people. Ignoring people can be hard though so then i would also say to just remind them that not everyone understands why people are different and that the things they are saying justify their confusion, but isn’t true. I would also suggest speaking to the teacher or supervisor if its at an after school program, and just letting them know that your kid is being made fun of and that they should remind all students that making fun of other kids isn’t nice. You would be surprised how any teachers and etc, don’t already install that information to their students.
Have you ever considered having children knowing you have Incontinentia Pigmenti. Do you think it will be easier for you now you know what incontinentia pigmenti is. Or do you think you will still struggle like im sure you mum did.? If your children have Incontinentia Pigmenti, how will you learn them to be comfortable with their own skin? Personally the pigment on my skin didn’t really bother me, but the lack of teeth i had made a greater impact on me. Finding an outlet is very helpful either it be playing a sport or creating art and/or literature, its really helpful when you find a way to express your emotions. I think it takes some years to be comfortable in your own skin, because you have to find yourself, your muse or voice. Those things can be really helpful, so i would try to engage my child in different activities
Did you see the new ribbon that’s been designed for Incontinentia Pigmenti?.What do you think of it. Do you think it will help people take notice.?
Yes, i have seen the new ribbon that’s been designed and I really like it. I think its wonderful that families have a token to show their support. I think it will help people take notice, and get people to ask questions about Incontinentia Pigmenti.
So what have you got going on in your life at the moment and what does the future hold for you. ?
I’m currently finishing up at community college so i can transfer to a four year, probably in NY. I want to study-aboard for a semester so I’ve been looking forward to applying for an opportunity. By the summer I will be helping produce specials for Brooklyn public access cable/tv and maybe even start a few independent film projects.
Do you have anything else you would like to add, any last minute words of advice for our IP parents.
Just keep your heads up high along with hope that things will get better. The struggles you are going through now are temporary and your children are capable of so much.
I want to say a very big thank you to Emily for taking the time to share with us. She is one strong amazing young woman and if my little lady turned out like her I would be extremely Happy. I also want to give a big shout out to an IP mum called Cheryl Torres who took the time to help me come up with the questions that I asked Emily.