Tuesday, 22 April 2014


Well Im sorry its been a while since I last posted. Things have been kind of crazy here. My little one hasn't been all that well.  She has been teething and not sleeping which most of you with small children will understand. but things  got even more complicated  and her hand and arm have started swelling. some days its not so noticeable  and then other days her arm looks like a balloon. also last weekend my Angel had another seizure which has left us all worried. as the week has gone on my little angel has become more her self again and is happy again, big smiles are back. but we are still a little worried how everything has happened all at once. We are now waiting for word off the hospital for her  to go and get some tests done.
My doctor is also doing some of his own tests to try and find out why her hand and  arm keeps swelling and he leaning towards kidney problems but we wont know for sure until tests are done.
After finding out what the doctor was thinking I asked some of the other mums dealing with IP to see if they have heard of anything like kidney problems have occurred in IP children/adults before and sadly it seems to be so. I was given a link to a case study done on this kind of thing which ill post below for anyone who wants do read it. As I wait for tests to be done Im going to have to keep reminding my self that nothing has been confirmed and I could be worrying for nothing. And I probably am as my princess is back to seeming normal and you wouldn't think there was anything wrong with her.


Monday, 14 April 2014


More than 80% of IP patients have abnormalities of their teeth, and these can be useful in making the diagnosis of IP. The primary (baby) teeth may be delayed. Both the baby and adult teeth may be affected. Some teeth may be missing altogether or when they do erupt, the teeth may be unusually shaped, typically peg-like or cone-shaped. The quality of the teeth and the enamel covering them is normal. Few individuals have serious dental problems, and most can be helped with cosmetic dentistry (orthodontics or prosthodontics) as necessary.

Adult teeth can be affected even when baby teeth have been fairly normal. Unfortunately, issues with baby teeth do not predict the course of adult tooth development.

Images are just an example and are not guaranteed  to happen.

Saturday, 12 April 2014

 All the genetic information that we need is inherited from our parents. The majority of the genes are present as two copies, one of which we have received from each parent. Genetic diseases can be inherited in a number of ways which are referred to as "Mendelian". Recessive diseases show up only when both copies of a pair of genes are abnormal. In dominant conditions, only one member of the pair needs to be abnormal for the disease to occur. A few diseases, of which IP is one, are caused by genes on the X-chromosome and are called "X-linked". This type of Mendelian inheritance is different because all females have two X-chromosomes, while males have only one X (and another, male-determining chromosome called the Y-chromosome). For most X-linked disorders, females are not affected since they have two X-chromosomes (one with the disease gene and one with a normal gene); the effect of the normal copy of the gene on one X overrides the effect of the abnormal copy on the other X. Males, however, do not have this second normal copy; they have only one X-chromosome, so they have no way to compensate for their only abnormal X-linked gene and thus they are affected with the disease. Some rare males can have two X chromosomes along with their Y--some males with IP have been found who have this chromosomal anomaly. 

IP is a dominant X-linked condition. This means that females with only one copy of the abnormal gene will show the disease, even though they have a normal gene on their other X-chromosome. Males who inherit the abnormal gene (and, of course, do not have a balancing normal copy) do not survive, which demonstrates that the normal copy of the IP gene is extremely important. With the identification of the NEMO gene in IP, we now know that males lacking a function copy of this gene will not survive due to liver failure, typically in the first trimester of pregnancy.

A woman who is affected with IP has one normal X-chromosome, and one X-chromosome carrying the abnormal gene. At each pregnancy she will give half of her genetic information to each fetus. Thus, for any pregnancy there is a 50-50 chance that she will transmit the X-chromosome with the abnormal IP gene, regardless of the sex of the fetus. On average, half of her daughters will inherit the normal X-chromosome and be unaffected, and half will receive the abnormal X and have IP like their mother. Half of the sons will inherit the normal X-chromosome and be normal, and the other half will receive the abnormal X. Since males typically do not survive without a normal copy of the gene, these "affected" males will either miscarry or be stillborn. In summary, half the daughters of an affected IP female will have IP and half will not, but nearly all the live-born sons will be normal. This 50-50 chance for affected females is true for each pregnancy, regardless of whether previous pregnancies have been affected or not.


Kylie is 5 years old; she was diagnosed with IP at 2months of age. At first when she was born here in New Jersey they said she just had a typical new born rash but then as I was being discharged even though the rash was still presentable. They explained to follow up with her primary doctor in 2 weeks which I did. He then explained it was some type of rash & prescribed her an ointment cream with no luck. He referred me to an infections specialist because he thought it was an infection. She was admitted and they ran a few blood test with nothing out the ordinary so they discharged her with yet another prescribed medication cream & instructions to be really sterile with her because her skin was really sensitive. Her rash still did not go away and her blisters where still there. I was afraid so I went back to her Primary care & he then sent me to see a dermatologist where they also did not understand what the problem was. I went to 3 pediatric dermatologist & no luck until one of the dermatologist told me real blunt. He said, “Honestly I am not sure. I have a friend who specializes in children and she is the head doctor on the specialty group of NYU Langone Skin & Cancer unit in New York City”. 
I remember this day as if it was yesterday. There was a snow storm coming and it was 2days before Xmas but I was desperate. So he asked me if he could get a hold of her would I travel to NYC so she could see my baby. Of course I sure did immediately! 
She was waiting for me in the ER unit. He explained to her in advance about my baby’s symptoms & according to her she said she knew right away Kylie had IP! As soon as she examined her she told me I know what your child has & there is not a cure with any medications. She has a rare disease and she said she would confirm it with a biopsy. Sure enough she was correct. My journey with her from that day started. I now had answers & I now knew that all those other prescriptions given to me by other doctors would not help or didn't because she did not just have a typical rash. 
No one in the Jersey area knew anything nor had any knowledge of Incontinentia Pigmenti. Her name is Dr. Julia Schaeefer in New York University Langone Hospital. Kylie has been her patient since she was 2months old & sees her yearly now. Kylie followed up with her for the first 3 years of her life every 6months. Now that she is getting older she goes every year for a follow up. 
At this time on top of having a dermatologist she also has a few other specialists that she sees. An endocrinologist who explained that she does fall off her growth chart but it is nothing major to worry about. A cardiologist who said everything now is normal but she does have a small murmur. A dentist who explained her cone shape teeth are because of the IP which I expected because her doctor made me aware of that. She has problems with hair patches, but as of now I Thank God that she is doing well & I have faith in my Lord because she will overcome this. 
I wanted to explain to those not every child who has IP suffer the severe effects that come along with this condition, some are minor than others & soon it will get better in time, & don't loose faith. All these trials only make our IP Angels special 
Thank You, Cheryl Torres

Thursday, 10 April 2014


As a lot of people know we have been working to get Incontinentia Pigmenti more well know. And the IPIF  have managed to get us a charity ribbon to help get us noticed, and here it is. 


I would like to say a big thank you to the company for designing this charity ribbon for us. FireApparelstore.com did an amazing job with our ribbon and I for one will be glad to call it our ribbon.  If you would like to learn more about the Ribbon designers then please click the following links



Wednesday, 9 April 2014

my angels skin so far.x

Maisies skin so far, we are not to sure what has made her pigment marks get darker and worse but we are aiming towards 3 things, either the cream we are using for her eczema, or the fact that she is a little under the weather because she is teething, or because she has got bowl problems at the moment which again is making her feel unwell.  I say she is a little under the weather , she seems ok in her self  but now and again a little clingy. if your little one has any problems like my Angels I strongly suggest you get them looked at.xx

Tuesday, 8 April 2014

some things to have checked.

We have all read about the parts of IP most people suffer with (the most common effects of IP). But as im learning more about IP in hearing about other things that people suffer with that have not yet been diagnosed as IP but looks more likely by the passing day.

Unable to regulate there body temperature

Low Immune system

sound sensitivity 

digestive problems

These are a some of the things iv heard people question if they are IP related, they have been confirmed in some cases but not in others so I think if you notice you or your child having problems with this kind of things then I would strongly suggest you/your child goes to the doctors and have it looked into. As more things crop up I will add to this list and keep you all as informed as I can.

Monday, 7 April 2014


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. 

Sunday, 6 April 2014


Articles may be obtained, at no charge, by writing a request to IPIF at ipif@ipif.orgArticles available written in other languages can be found at www.ipif.org Please visit our website for our fullINCONTINENTIA PIGMENTI BIBLIOGRAPHY Genetics 2185 “From ectodermal dysplasia to selective tooth agenesis”Mues GI, Griggs R, Hartung AJ, Whelan G, Best LG, Srivastava AK, D'Souza R.; AMERICAN JOURNAL OF MEDICAL GENETICS 2009 Sep;149A(9):2037-41. 2085  X-linked ectodermal dysplasia with immunodeficiency caused by NEMO mutation: early recognition and diagnosis” Mancini AJ, Lawley LP, Uzel G. Arch Dermatol. 2008 Mar;144(3):342-6. 5pp 1553 “X-linked anhidrotic ectodermal dysplasia with immunodeficiency is caused byimpaired NF-kB signaling” Rainer Doffinger, Asmae Smahi, Christine Bessia, Frederic Geissmann,Jacqueline Feinberg, Anne Durandy, Christine Bodemer, Sue Kenwrick, SophieDupuis-Girod, Stephane Blanche, Philip Wood, Smail Hadj Rabia, Denis J. Headon,Paul A. Overbeek, Francoise Le Deist, Steven M. Holland, Kiran Belani,Dinakantha A. Kumararatne, Alain Fisher, Ralph Shapiro, Mary Ellen Conley, EricReimund, Hermann Kalhoff, Mario Abinun, Arnold Munnich, Alain Israel, GillesCourtois, Jean-Laurent Casanova; NATURE GENETICS March 2001 vol. 27 277 – 2859pp 1984 “Clinical features of incontinentia pigmenti with emphasis on oral and dentalabnormalities” Snezana Minic, Gerd E.K. Novotny, Dusan Trpinac, Miljana Obradovic; CLINICAL ORALINVESTIGATION 2006 Dec Vol. 10 (4) 343-7 5pp 1452 “Incontinentia Pigmenti: Overcoming Cosmetic Challenges”Jeffrey S. Rouse, DDS; COMPENDIUM OF CONTINUING EDUCATION IN DENTISTRY Nov. 1999 Vol. 20 (11) 1034-6, 1038, 1040-1 5pp 1917 “A new mutation in exon 7 of NEMO gene: late skewed X-chromosome inactivation inan incontinentia pigmenti female patient with immunodeficiency” Natalia Martinez-Pomar, IvanMunoz-Saa, Damian Heine-Suner, Ana Martin, Asma Smahi, Nuria Matamoros; HUMANGENETICS; 2005 Dec. Vol. 118 (3-4) 458-465 8pp 1722 “The NF-kB signalling pathway in human diseases: from incontinentia pigmenti toectodermal dysplasias and immune-deficiency syndromes” Asma Smahi, Gilles Courtois, Smail Hadj Rabia, Rainer Doffinger, Christine Bodemer, Arnold Munnich, Jean-Laurent Casanova, AlainIsrael; HUMAN MOLECULAR GENETICS 2002 Oct 1 (Vol. 11 (20) 2371-2375 5pp 1811 “Incontinentia Pigmenti: A Window to the Role of NF-kB Function”Anna L. Bruckner, MD; SEMINARS IN CUTANEOUS MEDICINE AND SURGERY; June 2004 Vol. 23 (2) 116-24 9pp 1613 “NEMO/I KKy: linking NF-kB to human disease”Gilles Courtois, Asmae Smahi, Alain Israel; TRENDS IN MOLECULAR MEDICINE 2001 October Vol. 7 (10) 427-30 4pp 1569 “NF-kB signaling and human disease”Swaroop Aradhya, David L. Nelson; CURRENT OPINION IN GENETICS & DEVELOPMENT 2001, 11 300-306 7pp Neurology 2125 “Recurrent Stroke in a Child With Incontinentia Pigmenti”Cartwright MS, White DL, Miller LM 3rd, Roach ES: JOURNAL OF CHILD NEUROLOGY 2009 Jan 16. 3pp 2122 “Destructive encephalopathy in incontinentia pigmenti”Hart AR, Edwards C, Mahajan J, Wood ML, Griffiths PD: DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY 2009 Feb;51(2):162-3. Epub 2008 Nov 25 2pp 2294 “Early infantile manifestations of incontinentia pigmenti mimicking acuteencephalopathy” Abe S, Okumura A, Hamano SI, Tanaka M, Shiihara T, Aizaki K, Tsuru T, Toribe Y,Arai H, Shimizu T. BRAIN DEVELOPMENT 2010 July 6 2009 “Abnormal White Matter in a Nerologically Intact Child With IncontinentiaPigmenti” Shannon A. Bryant, BS, Lane Rutledge, MD; PEDIATRIC NEUROLOGY Mar. 2007 Vol. 36 (3)199-201 3pp 1492 “Disappearance of a White Matter Lesion in Incontinentia Pigmenti”Hideto Yoshikawa, MD; Yumiko Uehara, MD; Tokinari Abe, MD; Yoshihiko Oda, MD; PEDIATRIC NEUROLOGY October 2000 Vol. 23 (4) 364-367 4pp Ophthalmology 1799 “The Importance of Screening for sight-threatening Retinopathy in IncontinentiaPigmenti” Gavin A.E.Wong, M.R.C.P., Colin E. Willoughby, F.R.C. Ophth, Richard Parslew,M.R.C.P., Stephen B. Kaye, M.D.; PEDIATRIC DERMATOLOGY 2004 May-June Vol. 21 (3) 242-245 3pp 1739 “Retinal Tears Occurring at the Border of Vascular and Avascular Retina inAdult patients with Incontinentia Pigmenti” Robert A. Equi MD, Harshi S. Bains MD PhD, Lee JampolMD, Morton F. Goldberg MD; RETINA, THE JOURNAL OF RETINAL AND VITREOUS DISEASES2003 Vol. 23 (4) 574-576 3pp  2276 “Regression of retinal neovascularization after laser photocoagulation inincontinentia pigmenti” Ranchod TM, Trese MT. RETINA 2010 Apr;30 (4):708-9 2097 “Early indirect laser photocoagulation to induce regression of retinal vascularabnormalities in incontinentia pigmenti” Figen Batioglu and Emin Özmert; ACTA OPHTHALMOLOGICA4, Nov. 2008 2pp 616 “Spontaneous retinal reattachment in incontinentia pigmenti: “Sharon Fekrat, MD, Mark S. Humayun, MD, PhD., Morton F. Goldberg, MD; RETINA 1998 18 (1); 75-77 3pp 646 “Persistence of fetal vasculature in the eyes of patients with incontinentiapigmenti (letter)” Arman K. Fard, MD, Morton F. Goldberg, MD. ARCHIVES OF OPHTHALMOLOGY 1998 May 116 (5) 682-684 3pp  Dermatology 1833 “The Skin is Not the Predominant Problem in Incontinentia Pigmenti”Morton F. Goldberg, MD; ARCHIVES OF DERMATOLOGY; June 2004 Vol. 140 748-50 3pp 2298 “Incontinentia Pigmenti with vesicular stage in utero”Osório F, Magina S, Nogueira A, Azevedo F. DERMATOLOGY ONLINE JOURNAL Oct. 2010 Vol. 16 No. 10 2037 “Incontinentia pigmenti mimicking a herpes simplex virus infection in thenewborn” Fusun Okan, Zuhal Yapici, Ali Bulbul; CHILDS NERVOUS SYSTEM, Epub 2007 July 14, 3pp 2000 “Blistering rash in a neonate – not always herpes”Rajiv Sinha, John Criddle, Elisabeth Wain, Aman Ghandari; THE NEW ZEALAND MEDICAL JOURNAL Augst 2006 Vol 119 (1239) 3pp 2279 “Vaccination as a probable cause of incontinentia pigmenti reactivation”Alikhan A, Lee AD, Swing D, Carroll C, Yosipovitch G. PEDIATRIC DERMATOLOGY 2010 Vol. 27 No 1 62-64 2171 “Incontinentia pigmenti: treatment of IP with topical tacrolimus”Jessup CJ, Morgan SC, Cohen LM, Viders DE.; JOURNAL OF DRUGS IN DRMATOLOGY 2009 Oct;8 (10) 944-6. 3pp 2153 “Therapeutic use of topical corticosteroids in the vesiculobullous lesions ofincontinentia pigmenti. Kaya TI, Tursen U, Ikizoglu G.: CLINICAL AND EXPERIMENTAL DERMATOLOGY2009 Jun 1 3pp 2352 “Unusual primary cutaneous amyloidosis with an incontinentia pigmenti-likepattern” Wan H.,Ran, (China) INTERNATIIONAL JOURNAL OF DERMATOLOGY; 2011 Apr;50(4):485-7. 3pp 1494 “Warty linear streaks of the palm and sole: possible late manifestations of Incontinentia pigmenti”A. DiLandro, L. Marchesi, A. Reseghetti, T. Cainelli; BRITISH JOURNAL OF DERMATOLOGYNovember 2000 Vol. 143 (5) 1102-3 2pp2330 “Clinical and histologic features of incontinentia pigmenti in adults withnuclear factor-κB essential modulator gene mutations.Hadj-Rabia S, Rimella A, Smahi A, Fraitag S, Hamel-Teillac D, Bonnefont JP, de Prost Y, Bodemer C. JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY, INC. 2011 Mar; 64(3):508-15. 8pp 2130 “Detection of HPV-15 in painful subungual tumors of incontinentia pigmenti:successful topical therapy with retinoic acid” Donati P, Muscardin L, Amantea A,Paolini F, Venuti A.: EUROPEAN JOURNAL OF DERMATOLOGY May-June 2009 Feb 12. Vol19 (3) 1-5 5pp 1853 “Painful subungual dyskeatotic tumers in Incontinentia Pigmenti”Alison Young, Pamela Manolson, Benard Cohen, Mitchell Klapper, Terry Barrett; JOURNAL OF AMERICAN ACADEMY OF DERMATOLOGY; April 2005 Vol. 52 (4) 726-29 4pp 1754 “Nail dystrophy, an unusual presentation of incontinentia pigmenti”N. Nicolaou, R.A.C. Graham-Brown; BRITISH JOURNAL OF DERMATOLOGY 2003: 149: 1286-1288 3pp Ultrasound 2265 “Leukoencephalopathy: unusual sonographic finding in a neonate withincontinentia pigmenti” Hung PC, Wang HS. JOURNAL OF ULTRASOUND MEDICINE 2010 Vol. 29 851-854 1531 “Hydrops fetalis in three male fetuses of a female with incontinentia pigmenti”Andreas Dufke, Brigitte Vollmer, Heidemarie Kendziorra, Susanne Mackensen-Haen, Ulrike Orth,Thorsten Orlikowsky, Andreas Gal; PRENATAL DIAGNOSTICS 2001 Dec. 21 (12)1019-1021 3pp 1497 “A pregnancy following PGD for X-linked autosomal dominant Incontinentia Pigmenti(Bloch-Sulzberger syndrome)” Rachel Pettigrew, Hung-Chih Kuo, Paul Scriven, Paula Rowell,Kalyani Pal, Alan Handyside, Peter Braude, Caroline Mackie Ogilvie; EUROPEANSOCIETY OF HUMAN REPRODUCTION AND EMBRYOLOGY December 2000 Vol. 15 (12)2650-2652 3pp Males 1600 “Survival of Male Patients with Incontinentia Pigmenti Carrying a LethalMutation Can Be Explained by Somatic Mosaicism or Klinefelter Syndrome” The International IP Consortium; AMERICAN JOURNAL OF HUMAN GENETICS 2001 Dec. Vol 69 (6) 1210-1217 8pp 1538 “Atypical Forms of Incontinentia Pigmenti in Male Individuals Result fromMutations of a Cytosine Tract in Exon 10 of NEMO (IKK-y)” Swaroop Aradhya, Gilles Courtois,Aleks Rajkovic, Richard Alan Lewis, Moise Levy, Alain Israel, David L. Nelson; AMERICAN JOURNAL OF HUMAN GENETICS February 8, 2001 7pp 2242 “Incontinentia pigmenti in a Male Infant with Klinefelter Syndrome: A CaseReport and Review of the Literature.” Buinauskaite E, Buinauskiene J, Kucinskiene V, Strazdiene D,Valiukeviciene S.; PEDIATRIC DERMATOLOGY 2010 August 26 2064 “Incontinentia pigmenti: three new cases that demonstrate it is not only amatter of women” Feito-Rodríguez M, García-Macarrón J, Bravo-Burguillos ER, Vera-Casaño A, de Lucas-Laguna R. ACTAS DERSIFILIOGRAFO; 2007 Mar;98(2):112-5 4pps 1989 “Incontinentia pigmenti in male patients”Theresa R. Pacheco, MD, Moise Levy, MD, James C. Collyer, MD, Nelida Pizzi de Parra, MD, Cristobal A. Parra, MD, Marisel Garay, MD, Gabriela Aprea, MD, Silvia Moreno, MD, Anthony J. Mancini, Amy S. Paller,MD; JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY; 2006 Aug. Vol. 55 (2) 251-5 5pp 1893 “Incontinentia pigenti (IP2): Familiar case report with affected men.
Literature Review” Maria de la Luz Arenas Sordo, Barbara Vallejo Vega, Edgar Hernandez Zamora, ArturoGalvez Rosas, Luis Alberto Montoya Perez; ORAL MEDICINE AND PATHOLOGY; 2005 July 1 10 Suppl 2:E122-9 8pp 593 “ ‘Letter to the Editor’  Second Trimester Miscarriage of a Male Fetus WithIncontinentia Pigmenti” Koen Devriendt, Gert Matthijs, Jean-Pierre Fryns, Veronique Ballegeer’AMERICAN JOURNAL OF MEDICAL GENETICS Nov. 16, 1998 80(3) 298-9 2pp Articles may be obtained, at no charge, by writing a request to IPIF at ipif@ipif.orgArticles available written in other languages can be found at www.ipif.org Please visit our website for our fullINCONTINENTIA PIGMENTI BIBLIOGRAPHY

The articles are written by doctors and should be shared 

with your physician for review. These are for reference 

and education. They are not for diagnosing. Some are 

case studies and are inconclusive. Research is ongoing for

 IP and articles are updated. If you are interested in an 

article not included to date or question if a study was 

completed and article published please email 

ipif@ipif.org and we will do our best to research for you

. Thank You. ipif

Saturday, 5 April 2014


Here are some pictures to share, lets see if we can get the word out. x

Friday, 4 April 2014


I have a very special treat coming up for everyone very soon, I have asked the amazing Emily Batista  to take the time to talk to me about dealing with life  with IP. and she  said yes. So sometime this week, there will be an interview posted for you all to see and im hoping it will give you all a little hope that there is way to live your life dealing with IP.  For those of you who dont know who Emily is, Emily has a youtube Video about Incontinentia Pigmenti which I will post below  for you all to watch.

Thursday, 3 April 2014


I  was talking to another IP mum  one day and they told me a lovely story`,she told  me that when her daughter was feeling bad they would play this song and listen to it together, so this song has kind of become the IP song, or it has to me anyway listen to it and let me know what you think.