Angela

Name: Angela Nini

Birthday: August 7, 1972

Location: Butler, PA, USA

Family members with EB: Paternal Grandfather, Father, Aunt, Uncle, Cousins, Brother, Son and myself.

EB Type: Dominant Epidermolysis Bullosa Subtype unknown ( Biopsies inconclusive). Blistering is generalized and is more involved as a baby and elementary years, blistering greatly improves with age. Calluses are present on hands and feet. There is some nail dystrophy mainly on feet. No webbing or contractures are present.

Biography... in her own words:

My name is Angela and I'm honored to be picked to be EB mom of the month. I am so glad to share my experiences with EB and to let one and all to know a little about how EB affects my family. So here goes.

I was born and raised in Butler Pennsylvania. That is about an hour from Pittsburgh PA. I am the oldest of six children. My parents divorced when I was about six or seven years old and then my Dad moved to Tampa Florida when I was about nine or ten. So there it was my mom all by herself raising all of us on her own. To add a little spice to this I was born with a rare skin disease called Epidermolysis Bullosa. Well this was not such a big surprise to my family because my dad and my dads family members also had the skin disease. But to my mom it was a very big surprise because, you see, my dad did not tell my mom about the disease because it wasn't obvious (as strange as that sounds)... When I ask my mom how could she not tell she says that my dad would just tell her that the sores and scars that he had were from working on cars so she believed him.

My mom didn't learn about the disease until she had me and when I was born I was taken to Children's Hospital in Pittsburgh where they wanted to do all of these tests but as my dad tells me he wouldn't allow it. So I guess my parents took me home and cared for me as best as they could and my mom learned how to deal with the blistering.
After she had me she had my sister Nicole who was born EB free then came my sister Carrie who was also born EB free and then comes my brother Christopher who was born with EB and at this point my mom tells me that they decided to not have anymore children and I'm not sure if it was because of the EB or the fact that four children was plenty. So then a few years later they would divorce and he would leave my mom alone to care for all four of us and take care of two of us with this rare skin disease in which she didn't know much about. I have to say that my mom did an exceptional job.
We grew up on welfare and we had to go without a lot of things because my mom couldn't possibly work. But us kids came first and there was no doubt about it. To this day I don't know how she did it but she did such a wonderful job and I wish I could be half as wonderful as she is.
Well to say the least she did meet another man and had two more children to him but never got married so that made six children and well an alcoholic boyfriend (I wont go there). Lets move on!
Growing up with this rare skin disease had its ups and downs. I was made fun of in school and in public places but I can say that didn't scar me for life like some of the blisters did on me... I went to a Catholic School but I don't think that made matters any better because children are mean no matter if they are in the presence of God or not. I remember a time when I was in kindergarten and we were all playing ring around the rosy and none of the children would hold my hand. I was always picked last in any games or being picked as a partner. The funny thing is my sister who is 13 months apart from me was in the same grade as me and she was my worst enemy of all because instead of standing up for me she would make fun of me too. I remember crying in my pillow and wishing and praying that I could be the same as everyone else. Another funny thing is I never had anything to take care for my skin with and by that I mean my mom only provided needles and antibiotic salve and that was it. No bandaging supplies or anything. I remember my mom would dress me in tights and at the end of the day some of my blisters sticking to the tights and I would cry so bad because I was afraid to take them off, I knew that it would rip my skin raw. I can not remember a time that I was sat down and was told about the skin disease that I have. I didn't even know what it was called until I was about twelve or thirteen. All I did know was that it would get much better the older that I would get and that was the light at the end of the tunnel for me. I remember telling people that I had an allergy or that I fell off my bike or some other strange story so I wouldn't have to explain about this blistering thing that I had going on. Though I would tell people that it was a skin disease and it would get better when I'm older.
I have to say that I always hated people who pitied me and I hate that today. I always wanted people to see me as a person and the good qualities about me and not the blisters. Well I did have some good friends who looked past the blisters and that made things all right. And being the oldest of six children I always had someone to play with and baby-sat. So I can honestly say that there were some hard times dealing with EB but I don't think I would of changed a thing when I was growing up.

As I entered the wonderful world of woman hood it presented new challenges. High school and being accepted was about to really challenge my understanding of people and know just how mean and ignorant humans can be. My blistering greatly decreased when I was entering high school. My main blistered areas would be my hands and feet. But still if someone would notice just one blister I would be the laughing stock of the classroom. It wasn't until my sophomore year that I stated to feel like I belonged and that I wasn't such a freak of nature. I had a boyfriend and friends and I did everything that any other student and teenager would be doing. But my life had other more complicated things going on and the EB just took a back seat I actually even forgot I had it because my blistering at this time was occasional. I was the oldest in which that meant I would be the caregiver for the kids and my mom would go to college and get a degree and I would miss out on finishing college.
I was in a very abusive relationship with a guy who was so possessive and hit me all of the time and the last time that he hit me was when I was about 17 years old and he broke my nose and I never seen him again. But an Angel was sent to me by God and this Angel would sweep me off my feet, love me unconditionally and take care of me forever. This Angel that I am talking about is my husband David. I met him on a blind date who I met through my sister Nicole. A few dates with this guy and I was in love. I met Dave in 1992 and we were married in 1995. I knew he was the one for me because he did everything for me, he bought me my first car, he wined and dined me always, he bought me beautiful clothes, but most of all he accepted me for who I was and I was totally in love with him. He was the one who supported me when I went to my first Dermatologist appointment, biopsies, and would even help care for my skin when it would get bad. So I knew I wanted to be with him for the rest of my life. So married life was good I was working full time and so was he. We built a house but we both knew something was missing "children". So we started trying but you know I must have really been in love and happiness because my EB and the genetic thing never crossed my mind, all I knew was that I wanted children to fill the quiet house.
I got pregnant the spring of 1996. When I found out I was pregnant I was so happy and scared. The genetic thing came up when I was at my dermatology appointments before I was pregnant. The doctor would say you know there is a 50% chance of your children having the disease. So at that time I told Dave I don't want any children but after we were married and had a house it didn't seem to matter. Well anyway it came up again on my first OB appointment.
The doctor asked if I had any genetic problems and I answered yes and immediately they wanted me to go through genetic counseling but I refused. The reason I refused is because I felt that I knew about the percentages of my children having it. I knew the disease was dominant and the type that ran in my family was not fatal and that there was no cure. So I felt that knowing if this baby had EB would not make me change my mind if I was going to have him/her.

So a perfect nine months of pregnancy with no complications a beautiful baby girl was born on January 17, 1997. She was born EB free. I was never so thankful in my whole life. Believe me though every pimple or red mark she would get I was making sure it wasn't a blister. I just thought to myself that God sent me this perfect little Angel to care for because of all of the pain and challenges that EB had brought to my life and I could kind of live through my perfect skinned daughter and she could have the life that I had only dreamed about when I was younger. When I think about it now I must have been on drugs because it wasn't Gods choice if my daughter would have EB but the genetic lottery and that time I had won. But my second child I wouldn't be so lucky. I got pregnant with my second child in the winter of 1998 and refused genetic counseling, and refused to believe that he would be born with EB. So August 27, 1999 I would give birth to my son who inherited my EB. Only 24 hours after birth he developed his first few blisters. And after that I thought my life had turned to hell. The guilt that I felt was so tremendous that I wanted to give him up for adoption. I felt that I was the worst person to have given this poor, innocent baby this most terrible disease. My hospital experience was the worst I ever had. Once my son had his blisters developed the staff isolated me and my baby. I cried till my eyes swelled shut and there was no one there to provide support. My mom or siblings weren't there and my dad in which the disease comes from was in Florida so I had no one but my husband and his mother who pulled me to my senses and helped me. Well I couldn't wait to take him home and care for him for myself. The pediatrician at that time said to take him home and take care of him as you would yourself since I had the same condition. Well what a rotten thing to say to a mother who just found out her baby was dealt a disease which would give him pain and challenges beyond belief. All I wanted to hear was that there is help for your son and we will do what it takes to help him and you. I have to say it took months and months of crying and counseling and the Internet to finally pull myself out of the gutter. I have learned so much and have been through so much that I cant even put it into words.

Today I cant even begin to tell you the love that I have for my son and when I look back on what it was like at first I really regret not being more prepared and knowledgeable about EB. My family failed me by not telling me all of the things that take place in a baby with EB like the difficulty sucking, the irritability from the sores, bandaging advantages, and anything else that a person who wouldn't remember what it was like to be a baby with EB. I also blame myself for not learning more about it before I had children.
At the present I have never been happier. I have learned so much and I mainly have to thank the Internet family that I have and all of the support provided. Without that I would be lost as would many other people. My husband and I have learned so much about people and society and I believe EB played a part in that. My daughter Kayla is the best big sister she loves her brother unconditionally, well except when he leaves scabs in the bath tub (lol).

Matthew is doing so well and he just lights up my life I cant imagine my life without him and he has taught me a lot about myself and I cant wait to learn more and experience more. The strength that he has brought out in me has been unbelievable. I am a whole person and he is to credit for that. I can say that God sent Matthew to me because I needed him and I could not be more thankful. Don't get me wrong I would give anything to have him or anyone not suffer the ill affects of EB. To see Matthew delayed in crawling, walking, weight and etc just eats at me everyday but his love and strength out shines all of that and to know that he loves life just as anyone else makes me see that he has a place in this world and his place is with me and my family. One day I hope he knows how much I love him and how thankful I am that he is in my life and I wouldn't trade it in for anything ( well I would do anything for a cure).
Thank you for listening and I hope you got to know me and my family a little and how EB has affected us. I am glad to talk to anyone with questions or who needs advice you know I even need a little advice at times but all in all life is good to us and I'm so thankful. So many people take things for granted like having a healthy baby and I know I was one of them so please take a moment to be thankful for your life and all of the qualities that make you a whole person because life is too short and you only get one chance at it so make the best of it and all will be well.
I will hand it over to my husband Dave to write a few words on his feelings of EB.
Hello to everybody at EB world. My name is Dave I am 28 years old born and raised in Butler, Pa. I enjoy fishing and hunting in my spare time. I work for a ceramic company as a inspector/packer which takes up a lot of time. I met Angela in 1992. She told me a little bit about EB, I was always there to help her and learn more I felt it was very interesting. I always accepted Angela as she was and would help her when she had bad times with EB. You really could not even tell she had anything wrong with her but there was a time when she was working in a nursing home and her hands were blistered pretty bad and I felt bad but we got through it and I was there for her. I attended doctors appointments with her and got to learn more and more. I never let EB interfere with how I felt for Angela. We dated and did everything together. We married in 1995 and were so happy. We built a house together and felt it was time to have children. I knew that there was a chance that our children could have EB but that didn't seem to matter at the time I just knew we would care for him or her no matter what. We had our first child in 1997 and it was the best day of my life. She was perfect in every way her name is Kayla and I cant imagine my life without her. We had our second child in 1999 and Matthew was born with EB. Angela and I were devastated at first because we were not prepared for the fact that he would have it. Angela took it very hard and she needed a lot of support. We have come a long way. She has a lot of patience and does a lot for Matthew like wrapping and bathing. I try to help out as much as I can like cut Vaseline gauze and I do sometimes take care of Matthews skin like lance blisters and apply cream and bandage but I usually get bumped out of the way by the expert my wife. She does a lot for Matthew and I admire her for that she has a lot of strength and she is amazing to me! The way I feel is that I love my wife and my son unconditionally and exceptionally. It hurts my heart to see Matthew suffer blisters and I would do anything to take the blisters away and give him a normal life but I'm just thankful that he is otherwise healthy and he is my son. I know his disease will improve and that gives me a little peace of mind but I still worry everyday about his skin and how he is feeling I just want him to be happy. I just want to let everyone know with children with EB and adults with EB to hang in there and pray for a cure real soon. You all are amazing people and I'm glad you are there for my wife to talk to and to provide support because you all have helped her out so much. Thanks for listening and thanks for caring!