Allie was born in Aug 2003 with a few blisters on one arm. Within a week, her entire body was covered with large blisters (from her scalp, trunk, groin/diaper area, both arms, hands, legs and feet). Then a military dermatologist diagnosed Allie and started her immediately with several specialists. Allie has had most of the common symptoms of IP including skin, eye bleeds, dental malformations, and thin, coarse hair. She has also experienced several less common struggles.
Allie’s skin remained blistered for approximately 11 months on all four extremities and her trunk. For an overlapping 4-5 months, she also had the IP warty phase on her hands/fingers, calves, feet/toes. Since that time she gets flare-ups when her body is stressed. For Allie this includes; illness, heat exposures, teething, and occasionally growth spurts. These flare ups would vary in appearance; big IP blisters, small puss filled or hard bumps that could be red or white, hive like areas, or the hyperpigmented areas could become red or darker, raised/bumpy (these in particular are very itchy and uncomfortable). These flare ups could take place anywhere on her body, but her right forearm (which was the most severely blistered area and scarred) is the most prominent location. We quickly learned by looking at this arm whether the stressor was viral or bacterial, allergy, heat or something else. Now, at age 18, Allie’s arm will still react to illnesses.
Allie has the typical IP dental malformations, missing 11 adult teeth and several are mis-shaped/mis-placed. She was found to have two eye bleeds prior to age 2 that required laser treatment. Her hair is thin and coarse, typical for IP. She was always small in stature, not breaking 45 pounds until 6th grade. Allie has always been pale.
Less commonly, Allie has faced issues with severe thermo-regulation. For years she struggled with heat intolerance, with her range of tolerance being 70 to 80 degrees (based on growth spurts). After puberty she has had a drop in her core temp and struggles to maintain a normal temperature, pushing hypothermia on several occasions. To this day Allie runs colder and for 5 years would not even run a fever when sick. Allie was also diagnosed through mitochondrial testing as being unable to fight viral and yeast infections normally. She also had to repeat several infant immunizations as her body did not develop any antibodies to the initial series. She was diagnosed and treated for low muscle tone. She lost significant hearing and all speech recognition in one ear.
Research indicates that new symptoms do not appear after about age 2-3. Allie had her first stroke in 5th grade that resulted in a five-month altered migraine. Despite that area healing, unknown neurological changes have been found in her MRIs and EKGs since this time frame. The neurological team has not seen nor do they know what these changes mean, so regular follow ups are required for monitoring.
Currently Allie is preparing to start her second year at the Colorado School of Mines. She is majoring in Metallurgical and Material Engineering with a Minor in Quantum Physics and a minor in Math. Her goal is to one day work in nanotechnology to improve our military defense systems. Living in a mild climate, she has picked up rock climbing, hiking, and skiing. She enjoys spending time with her friends and traveling. Since age 10 Allie has actively participated in advocating for IP, better research, better accessibility of information for parents, and changes in medical protocols. She helps her mom with an international support group for IP by frequently talking with parents and teens about living with IP. IP definitely does not define Allie, but Allie does help define IP.