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Frequently Asked Questions

Can a man have ALD/AMN if his mother/aunt/grandmother is not a carrier?

Frequently Asked Questions - FAQs
In rare cases, yes. About 5% to 7% of ALD/AMN cases arise from "de novo" genetic mutations-mutations that were not present in the child's parents.
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How can a man have AMN if his mother/aunt/grandmother is not a carrier?

Frequently Asked Questions - FAQs
In some unusual cases-about 5% to 7% of all cases, according to research published by the late Hugo Moser, M.D., a pioneer in ALD studies-ALD arises from "de novo" mutations-genetic mutations that were not present in the parents.
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How can a boy have ALD if his mother/aunt/grandmother is not a carrier?

Frequently Asked Questions - FAQs
A boy inherits the mutated ALD gene from his mother. However, it is possible for a boy to have ALD if his mother does not carry the mutated gene. This is because s an estimated 5%-7% of cases are de novo mutations, meaning that the gene mutation arose spontaneously in the child when it was not present in the mother.
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How can a woman find out if she is a carrier of ALD/AMN?

Frequently Asked Questions - FAQs
A screening test can identify carriers of the ALD/AMN gene with 99% accuracy. The test requires only a blood sample. Please contact Kennedy Krieger for more information on having the blood test.
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What are ALD and AMN?

Frequently Asked Questions - FAQs
Adrenoleukodystrophy (ALD) describes any of several closely related inheritable disorders that affect the adrenal glands, nervous system, and testes. Adrenoleukodystrophy is transmitted as an X-linked trait (the neonatal form is by autosomal recessive transmission and is a different disease). It results in the accumulation of long chain fatty acids in the nervous system, adrenal gland, and testes.
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Can a man with AMN/ALD safely have children who are free from the disease?

Frequently Asked Questions - FAQs
It depends. A man with AMN/ALD does not pass along the mutated gene to his sons, so his sons will be free of the disease. All of his daughters, however, will carry the mutation.
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Can a woman carrier of ALD/AMN have children who are free from the disease?

Frequently Asked Questions - FAQs
Yes. With each conception, there is a 50-50 chance of passing on the defect on the X chromosome. If the defect is passed on, a female child will be a carrier, and a male child will have the disease. Prenatal testing can identify, during pregnancy. whether the defective gene has been passed on.
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If any person in the family has ALD, AMN, or is a carrier, who else in the family should be tested?

Frequently Asked Questions - FAQs
It depends on their relationship to the person who has ALD. For example, if a boy has ALD, his mother should be tested for the mutation, as should all of his siblings. His mother's siblings-especially sisters-should be tested as well, since they may also have inherited the ALD mutation and be at risk for passing it on to their children. Genetic counselors can best advise you as to who in your family should be tested.
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Are there any symptoms for women to be aware of for carriers of ALD/AMN?

Frequently Asked Questions - FAQs
Yes. Although women who carry the ALD gene mutation do not develop the brain disease, some display mild symptoms of the disorder. These symptoms usually develop after age 35, and primarily include progressive stiffness, weakness, or paralysis of the lower limbs, numbness, pain in the joints, and urinary problems.
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What research is taking place on ALD and AMN?

Frequently Asked Questions - FAQs
One group at the University of Minnesota has used a combination of stem cell transplantation and therapy with a drug called Mucomyst, approved by the FDA to treat cystic fibrosis and acetaminophen overdose. This was tried on three boys whose disease had already progressed past the point when bone marrow transplant is generally thought to be effective. So far, MRI scans show no further progression of the disease, and the approach is being tried in additional patients.
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What is the prognosis and life expectancy of a man with AMN?

Frequently Asked Questions - FAQs
It depends on the type of AMN that he has. In some people, AMN affects the spinal cord only, while in others, it affects both the spinal cord and the brain. About 54% of patients with AMN have normal brain function, while the other 46% have some type of brain involvement. Magnetic resonance imaging (MRI) can determine if the brain is affected by the disease. Patients without cerebral involvement have a significantly better prognosis than those in whom the brain is affected.
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How many strands may I add to my Mother or Grandmother Bracelet?

BeadifulBABY :: FAQ's - Frequently Asked Questions
You may add up to four strands to your Mother or Grandmother Bracelet at a time using our online product pages. Need more than four strands - we can do it! Simply add a four strand bracelet to your cart, then add another bracelet to your cart for the additional strands. E-mail us at CustomerService@BeadifulBABY.com and let us know you want to combine the two bracelets to form one complete bracelet and we will create your custom bracelet for you.
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My mother/grandmother is disabled. Do you have wheelchairs?

Spelman College: Reunion
Yes. Please contact the Office of Alumnae Affairs at 404-270-5064 no later than one week prior to Reunion so we can make the necessary arrangement for wheelchairs.
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How can a person (male/female) make certain any future children are born free from ALD/AMN?

Frequently Asked Questions - FAQs
A man who has ALD or AMN will not pass the disease gene to any sons, but all of his daughters will carry the mutation. A woman who carries the mutated gene has a 50-50 chance of transmitting the mutation in each pregnancy. To avoid passing along the gene, there are two options: in vitro fertilization with preimplantation genetic diagnosis, which would avoid implanting embryos with ALD.
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A mother is described as a "carrier" for a glycogen storage disease. What does this mean?

FAQ - Frequently Asked Questions
This means she has two copies of a gene that codes for an enzyme involved in glycogen storage; one copy is healthy, the other is defective. She can pass along either copy to her offspring with equal probability. (If the father is also a carrier, their offspring has a 25% chance of inheriting the disease, and a 50% chance of becoming a carrier.)
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Can you ice and decorate a cake my grandmother / aunt makes?

Frequently Asked Questions (FAQ) provided by Extravagant Des...
Yes we can. However, our price is based on cakes being 3" tall to enhance your design and decorations. If your supplied cake is not this tall, there will be an small extra fee as we will have to physically make your cake taller which involves extra time and work.
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Can I add an additional strand(s) to my existing Mother/Grandmother Bracelet?

Religious Jewelry Personalized Rosary Family Rosary Mother B...
Yes, Addictive Jewelry will add additional strands to bracelets originally purchased from us. Please email us for instructions.
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Can the mother add a man's name to the Registry?

No. The Georgia Code does not allow anyone other than the man being able to add his information to the Registry. Yes. A Paternity Acknowledgment is encouraged. A Paternity Acknowledgement can be completed if both the mother and father agree and if the mother was not married at the time of conception, birth, or any time in between. A Paternity Acknowledgment cannot be completed if the mother was married to another person at the time of the birth of the child.
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What happens if the mother was married to another man at the time the child was born?

New York Court Help -
The mother's husband at the time of the child's birth is the legal father of the child unless the court decides to name a different man based on the evidence. The evidence will usually include court testimony by the mother, by her husband at the time of the child's birth, and by the man who is supposed to be the real father. The evidence will also usually include DNA tests.
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What is the most effective treatment for ALD?

Frequently Asked Questions - FAQs
present, there are only two treatments for ALD: Lorenzo's oil and stem cell transplantation using either bone marrow stem cells or umbilical cord blood stem cells. These treatments appear to be most effective if they are used before the onset of symptoms. There are currently two sources for transplanted stem cells: umbilical cord blood (UCBT) or bone marrow (BMT).
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What is mother-to-mother support for breastfeeding?

Mother-to-Mother Breastfeeding Support - Frequently Asked Qu...
Mother-to-mother support for breastfeeding means women helping women breastfeed their babies. Experienced breastfeeding mothers model optimal breastfeeding practices, share information and experiences, and offer support to other women in an atmosphere of trust and respect. In this setting, pregnant women and mothers who are breastfeeding explore options that result in a satisfying breastfeeding experience.
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Why is mother-to-mother support needed?

Mother-to-Mother Breastfeeding Support - Frequently Asked Qu...
Many traditional societies have recognized that a new mother is often vulnerable and sensitive and needs encouragement and support. The informal, traditional support system that positively reinforced breastfeeding in the past may no longer be in place where modernization and bottle-feeding have become the norm. Mother-to-mother support helps fill this gap, as usually it is easier for mothers to share their concerns with other mothers.
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Who benefits from mother-to-mother support?

Mother-to-Mother Breastfeeding Support - Frequently Asked Qu...
Babies, mothers, family members, and health care providers all benefit from mother-to-mother support. Pregnant women gain knowledge in preparation for breastfeeding, and mothers receive support and learn from the wisdom of more experienced mothers. Babies get their choice food as well as a healthy start in life. Husbands and other family members benefit because a new mother who is well supported has greater confidence and can cope better with the adjustments of motherhood.
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What are the ramifications for the mother?

Vanishing Twin Syndrome - Answers to Frequently Asked Questi...
Physically, none. But emotionally, the mother may be feeling an awkward combination of grief over the loss of one baby and relief for the viability of the surviving baby. It is important for the parents to grieve in a way that feels appropriate, acknowledging the loss of a child as well as the loss of their identity as parents of multiples. Vanishing Twin Sydrome FAQ - Get Answers to Questions A...Is It Twins? 10 Signs That You're Pregnant with Twi..
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How long can a mother participate in mother-to-mother support?

Mother-to-Mother Breastfeeding Support - Frequently Asked Qu...
There is no set time limit for a mother's participation, though a mother may move on to different types of involvement as time passes. For example, women may make contact and/or attend meetings during pregnancy or while breastfeeding and may continue with subsequent children. A mother may choose to stay on and become one of the "experienced" mothers, or she may undergo training and become a telephone counselor, peer counselor, or facilitator for a mother support group in her community.
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Is it safe for a hepatitis B carrier mother to breastfeed her baby?

Breastfeeding Resources | National Policies
Yes. A mother infected with hepatitis B virus does not need to avoid breastfeeding. She can begin breastfeeding her infant immediately after birth if she follows the recommendations of the Immunization Practices Advisory Committee. Her infant should be vaccinated within 12 hours of birth with the second dose of vaccine given at 1 month of age, and the third dose at age 6 months.
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What does Grandmother have to do with this?

FAQ
The following tips will help customers detect cramming early and avoid becoming a victim of the practice: Question the telecommunications service provider (whose name and logo appear on the page of the bill) of any unfamiliar charges.
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What services does Aunt Julie offer?

Aunt Julie Pet Communicator - FAQs
I offer Consultations done over the telephone. There is the Initial Consultation and subsequent Follow-Ups (same animal) for future issues. Refer Available Services / Order Here page for all info, prices, how-to, etc. Areas of interest and concern taken up are covered on this page as well as below.
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So how does Aunt Julie feel about "Testing"?

Aunt Julie Pet Communicator - FAQs
I have not yet come across a pet that does not get offended by my "testing" them er uh I mean by my being tested (as that's how they invariably take it). So...No. If you don't like their answer, I don't know you well enough to predict what you have apparently decided the animal was supposed to say. I repeat, what you have apparently decided the animal was supposed to say. Animal communication is a loving and wonderful thing.
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What's an Aunt Hannah?

Birmingham Delta Gamma Alumnae Chapter | FAQ
The Aunt Hannah program is a fun and exciting new way to get involved with our chapter collegians (Zeta Xi and Zeta Nu). As an Aunt Hannah, you will be paired up with a collegian for the school year. You are encouraged to support your "niece" -- i.e., meeting for coffee, going to the movies, sending midterm and final exam care packages, or making periodic phone calls. Contact Meredith McCrorie for more information on the Aunt Hannah program.
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