i have 2 generations of IP in my family i have it n so does my mum. im currently pregnant at the mo and have been told there is a strong possibilty that my child will have it. as for myasthenia gravis none of my family have ever had it.
My 5-week old daughter was just diagnosed with IP this morning. I have some pigmentation issues on my hands and odd hair patterns on my legs, so the doctor determined I have it as well. After reading the symptoms, I have several others (optic nerve damage, extra nipple, etc.) that I've had my whole life without an explanation - always assumed it was because my mom had me over the age of 45. I remember my nana having odd pigmentation in her hands as well.
My family is mostly women. There have been 3 boys and 6 girls. My mom had 2 miscarriages before me - I'm wondering if these were IP boys. This was back in the 70s, so I'm not sure if they figured out the gender of miscarriages back then.
We live in NJ and our 2 month old was just diagnosed. We have seen 2 dermatologists, an opthomologist and a ped neurologist. All of them have seen a few cases over their careers, but it seems that the disorder is so rare that there isn't anyone who specializes.
We are looking for a genetic counselor and/or geneticist, anyone know of where we can go in NJ?
Check out New Jersey Medical School
Dr. Smith at Vanderbilt is a Dermatologist with great knowledge of IP and has seen several cases. They also have a Genetics dept with great knowledge of IP.
Check out Nishamom questions and answers on the previous page. I'm 44 with IP and have a 13 year old with IP. I had teeth issues but now my teeth look great (bridge work), my vision had nothing to do with IP. I had Lasix 3 years ago. Works great! No seizures
My daughter had her eyes checked every month for a year--she has 20/20 and no problems. SHe will need dental work beginning in May. She would of needed dental work for the fact that she fell on a diving board and cracked over 3/4 of her tooth.
Her blisters were at birth and stopped when she was 1 years. She has met all of her milestones. SHe and I both have hypopigmented areas on her legs. Mine have faded since I'm much older. She is a
smart girl. The day my daughter was born her Pediatrician was on top of things. He had returned from a conference on IP. Did the Dermatologist do a skin biopsy? The results of the biopsy will help with the Dx. Go to the NORD website and look up IP. Also, document the lesions with photos. I took pictures of her skin all of the time for the first year. Plus, the many pictures taken of her because she's so pretty. Keep a diary of new blisters, when the warted off, if they returned and when. Also, Baylor in Texas has been researching IP esp. concentrating on the eyes.
What is Myasthenia Gravis?
Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Muscles that control eye and eyelid movements, facial expression, chewing, talking, and swallowing are often, but not always, involved. The muscles that control breathing and neck and limb movements may also be affected. Myasthenia gravis is caused by a defect in the transmission of nerve impulses to muscles. Normally when impulses travel down the nerve, the nerve endings release a neurotransmitter substance called acetylcholine. In myasthenia gravis, antibodies produced by the body's own immune system block, alter, or destroy the receptors for acetylcholine. The first noticeable symptoms of myasthenia gravis may be weakness of the eye muscles, difficulty in swallowing, or slurred speech. Symptoms vary in type and severity. Myasthenia gravis is not directly inherited nor is it contagious. The first steps in diagnosing myasthenia gravis include a review of the individual's medical history and physical and neurological examinations. If the doctor suspects myasthenia gravis, several diagnostic tests are available to confirm the diagnosis, including a special blood test that can detect the presence of immune molecules or acetylcholine receptor antibodies.
Is there any treatment?
Myasthenia gravis can be controlled. Some medications improve neuromuscular transmission and increase muscle strength, and some suppress the production of abnormal antibodies. These medications must be used with careful medical follow up because they may cause major side effects. Thymectomy, the surgical removal of the thymus gland (which often is abnormal in myasthenia gravis patients), improves symptoms in certain patients and may cure some individuals, possibly by re-balancing the immune system. Other therapies include plasmapheresis, a procedure in which abnormal antibodies are removed from the blood, and high-dose intravenous immune globulin, which temporarily modifies the immune system and provides the body with normal antibodies from donated blood.
Can someone recommend a doctor in NY area who treat children with myasthenia gravis? My 3 year old niece who is over seas is diagnosed with this she is currently on medication but has not really helped. Her parents are considering bringing her over here for treatment. Please help!
I am a new here and have known that I have IP for a few years (myself, mother and older sister were all diagnosed about 10 years ago) I have only just decided to research this and find out exactly how it may effect me etc. Looking online it seems that very few in the UK are aware or know a lot about this even the doctors who diagnosed us was reading from a book as they had never heard of this any ideas where I can find information?
My grand daughter was born 1/21/2012 with the blister and my daughter Jennifer (also a RN knew it was not a normal neonate rash or herpez. She found the information and brought it to the baby's MD & had the biopsy which confirmed the diagnosis)
You will need to be your own advocate! No doctor will be able to ever know as much about IP as you do, you may even have to educate the MD. Just remember that "Knowledge is Power".
Good luck and God Bless :)
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