LowALP.com - Low Alkaline Phosphatase,
a Hereditary disorder of poor bone & teeth mineralization, causing osteoporosis & bone fractures - Low ALP
Alkaline Phosphatase Deficiency is also called
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What is Alkaline Phosphatase & HPP ?
HPP, is an inherited metabolic bone condition that often
the development of
bones and teeth. 'Hypo' means low or deficient in latin, and alkaline
is a human enzyme that helps form bone. Thus 'hypophosphatasia' is
simply 'low or deficient phosphatase' levels . This can cause serious
catastrophic illnesses in affected patients. The signs and symptoms
can vary from mild cases
causing only dental abnormalities, to much more severe cases that have
life-threatening consequences and can cause premature death. ALP, or
Phosphatase, is an
enzyme produced by the human body and it is routinely measured in
blood tests during physical
exams. It is LOW in cases of HPP, and low ALP is the hallmark sign of
ALP is necessary for proper bone development, and it's deficiency in
HPP usually causes premature OSTEOPOROSIS or weakening of bones and
frequent and severe bone fractures, even in children and young
adults. This is a GENETIC DISORDER, where a defect in the
gene does not allow the body to produce the proper ALP enzyme in proper
amounts. When the patient has inherited one defective gene and
normal gene (a condition called 'heterozygous'), they usually have LOW
ALP and their bone and teeth may
form, but not normally. They can be prone to serious
disease and severe fractures early in life, and premature dental
disease and tooth loss. It can also cause a myriad of other symptoms
throughout the body.
How Common is HPP?
Recent research indicates that HPP IS MUCH MORE COMMON THAN PREVIOUSLY BELIEVED-
A study conducted in 2014 indicated that persistent alkaline phosphatase deficiency was found in approximately 1 of every 1544 adults (0.06%) in the patient population tested. These patients likely suffer from the 'heterozygous' genetic mutation that causes osteoporosis, brittle, fragile bones, and dental disease. Thus, OVER 200,000 people in the USA may be afflicted with this condition and the vast majority are not aware of it. Several other recent studies indicate that the number of people suffering from LowALP may be much higher, perhaps 1 in every 200.
See the full article at https://www.ncbi.nlm.nih.gov/pubmed/24443354
It is important for physicians and health care providers to be aware of this illness because it dramatically changes the way these patients should be treated, especially for osteoporosis. These patients should often be treated the OPPOSITE way that other patients are treated with regard to bisphosphonate medications (such as Fosamax), vitamin D, and Calcium. It is important that physicians with knowledge of and experience with HPP treat patients suffering from HPP. Patients with HPP are aften advised NOT to use bisphosphonates, vitamin B-6, vitamin D, or Calcium supplements until they are properly evaluated by a doctor familiar with current recommended treatment protocols for patients with HPP and obtain specific instructions from that doctor.
There are now treatments for HPP that are specific and can reverse many of the symptoms and damage cause by HPP. These treatments can result in dramatic improvment and can tremendously improve the quality of life of patients. The medicine was recently developed and is now FDA approved in the USA. It is basically the ALP enzyme itself, in an injectable form. It replaces the deficient ALP in the patient's body. In children suffering from the infantile homozygous version, it can be a life-saving dramatic treatment. See an example here: https://www.criver.com/everystep/
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WE NEED YOUR HELP!
LowALP & HPP are recently discovered conditions and more research is urgently needed. We at LowALP.com are a Volunteer-based organization trying to help improve the treatment of these conditions for children and adults suffering with these illnesses. Our organization was formed by physicians who are interested in advancing the treatment and the research into the cause of these diseases. We are looking for people who may be help us with the research. We can help guide patients in getting more effective treatement from their doctors and we would like to learn more about how patients are being diagnosed and treated in their communities. Please share your contact email addresses with us and we will share our email newsletters with you, and keep you informed as we strive to help patients with LowALP!
If you are interested in joining our email mailing list (which will never be shared with any other organizations), please visit our facebook page and 'like' us there, or leave yourcontact information at our email address - LowALP@yahoo.com We will keep you up to date as significant progress is made. Thank you.
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