Aplasia Cutis Congenita (ACC)

[dadinTC]

Hello everyone. If anyone has a son or daughter with what my son and I affectionately call a "lucky bump" as illustrated in my profile photo . . . I'd love to hear from you.

I'm assuming my son (who's turning 4) has Aplasia Cutis Congenita (ACC) since the pictures I've seen on the internet look very similar to what my son has on his head.

My 2 biggest concerns are maintenance and prevention.

I want to maintain his good health and I don't know if or how the ACC may play a symptom to health complications in the future.

I also want to be part of the discussion so that we may help find the causes and cures for this condition.

My wife and I were blessed w/ 2 wonderful kids as a result of in vitro fertilization (IVF). Our daughter (who is 2) doesn't have ACC . . . at least not yet.

I'm trying to gather a database of ACC data so if you'd like any information from me, please don't hesitate to ask.

I look forward to discussing this with you and thanks in advance.

John

[Zolinco]

Hi my daughter was born with aplasia cutis congenita. We were unaware of what it was until she was 10 yr old. At first we thought it was something that had occurred at the time of her delivery but when I enquired as to what it might be none of the doctors had any idea! She had 2 small red bald spots, that were completely healed over at the time of her birth. As she has grown so has the bald spots. Thankfully she never had any problems either mentally or physically, she's a healthy 14 yr old with all the traits of being a teenager, I'm happy to say! I would like to know more on the type of surgery available and if it's been successful, as I wouldn't want to put her health at risk for the sake of it being cosmetically. She has long blonde hair which helps to disguise them, but at times her hair parts and I don't want her teased.  She has never had it scanned  than visionary dignosed. I know very little other than what I've read on the net. No one in my family has ever had this so it's not hereditary to my knowledge.

[StephCarlyn]

My daughter was born with Aplaisa cutis congenita she is 2 months now we still dont know very much about it. The sore she was born with is on the crown of her head and the size of a number 2 pencil eraser. The scab got accidentally ripped off three times in the first month of life before it didnt scab up again. She has a raised bump now her doctor says we have to watch. I guess if it turns fire truck red she will need surgery. She has been showing signs of having a headache and I dont know if this genetic disease is to blame or if its something else. I wish there was more info on this.

[Coll77]

I have ACC its a quarter size on the back of my head with a bump. and if i feel it with my hand it feels like i can feel a little pain maybe more itchy. I AM GETTING SICK AND TIRED.. of thinking that its ok to have it but not knowing 100 percent sure it won tcause problems in the future. i am 25 years old and all i have been reading is how it can cause cancer and in the long run cause problems.  this article has not helped me feel better. I havnt had any issues with it  i was healed in  my mothers stomach and it hasnt grown out differently or anything weird. just stayed the same as i grew...... ok. so from what im reading... i feel..do  i get surgery because it may cause problems still? can someone answer these questions. this is my life.. i dont want to have this in the back of my head for the rest of my life. no pun intended.

[aabranham]

Hi, My son is almost 3 years old and was born with Aplasia Cutis Congenita.  He had the hair collar sign (darker ring of hair) around a soft spot that was barely covered with skin about the size of a dime when he was born.  Also, next to the soft spot was a very firm raised bump which is a bit smaller than a dime.  The bump feels very knobby like bone, but we haven't had a CT scan done yet.  We did have an MRI and MRA&MRV (to scan the arteries and veins) when he was 6 months old. Everything checked out fine and they said we'd only need further testing if he showed any neurological issues like epilepsy or seizures.    
His development is totally normal, but today I noticed bruising on his soft spot and some mushy bumps under the skin on his soft spot.  Maybe just hit his head?  I don't know.  We are going to see the doctor, but who do I see?  Pediatric dermatologist, neurologist, or geneticist???  I still wonder if there will be any other symptoms manifest in the future and would like more information about this condition.  Does anyone's child have abnormalities of the skull with bumps?

[jlinenberg]

Just came across this board and my daughter has aplasia cutis congentia (I have it as well and so does my mom/her grandma) and she also has partial agenesis of the corpus calloseum. Would love to know if these are related, I have always thought no but interesting to learn someone else out there has BOTH of these things as well.

[Mikevd]

Hi, i'm Mike!

I'm 16 years old now and I live in The Netherlands. I have the aplasia cutis congenita disease too, i've been undergoing surgerie for three times and it stil did not dissappear..?  Is it even possible?

And for the parents with questions you can ask me, i have the disease by myself so it might be lot easyer to get some info about the disorder or the behaviour!

Sorry for my bad English,

Mike