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Nairaland Forum / Nairaland / General / Health / Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment (25744 Views)
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Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Mopolchi: 12:38pm On May 11, 2019 |
Sorry for this 2 Likes |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Houseofglam7(f): 12:38pm On May 11, 2019 |
Winners72:If it's okay with you, please send me a copy of the diagnosis. |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Nobody: 12:41pm On May 11, 2019 |
this is genetic Overview Epidermolysis bullosa (ep-ih-dur-MOL-uh-sis buhl-LOE-sah) is a group of rare diseases that cause fragile, blistering skin. The blisters may appear in response to minor injury, even from heat, rubbing, scratching or adhesive tape. In severe cases, the blisters may occur inside the body, such as the lining of the mouth or the stomach. Most types of epidermolysis bullosa are inherited. The condition usually shows up in infancy or early childhood. Some people don't develop signs and symptoms until adolescence or early adulthood. Epidermolysis bullosa has no cure, though mild forms may improve with age. Treatment focuses on caring for blisters and preventing new ones. Symptoms Epidermolysis bullosa signs and symptoms vary depending on type. They include: Fragile skin that blisters easily, especially on the hands and feet Nails that are thick or don't form Blisters inside the mouth and throat Thickened skin on the palms and soles of the feet Scalp blistering, scarring and hair loss (scarring alopecia) Thin-appearing skin (atrophic scarring) Tiny white skin bumps or pimples (milia) Dental problems, such as tooth decay from poorly formed enamel Difficulty swallowing (dysphagia) Itchy, painful skin Causes Epidermolysis bullosa is usually inherited. The disease gene may be passed on from one parent who has the disease (autosomal dominant inheritance). Or it may be passed on from both parents (autosomal recessive inheritance) or arise as a new mutation in the affected person that can be passed on. The skin is made up of an outer layer (epidermis) and an underlying layer (dermis). The area where the layers meet is called the basement membrane. The various types of epidermolysis bullosa are largely defined by which layer the blisters form in. The main types of epidermolysis bullosa are: Epidermolysis bullosa simplex. This is the most common form. It develops in the outer layer of skin and mainly affects the palms and the feet. The blisters usually heal without scarring. Junctional epidermolysis bullosa. This type may be severe, with blisters beginning in infancy. A baby with this condition may develop a hoarse- sounding cry from continual blistering and scarring of the vocal cords. Dystrophic epidermolysis bullosa. This type is related to a flaw in the gene that helps produce a type of collagen that provides strength to the pig-skinlike dermis layer of the skin. If this substance is missing or doesn't function, the layers of the skin won't join properly. Risk factors Having a family history of epidermolysis bullosa is the major risk factor for developing the disorder. Complications Complications of epidermolysis bullosa may include: Infection. Blistering skin is vulnerable to bacterial infection. Sepsis. Sepsis occurs when bacteria from a massive infection enter the bloodstream and spread throughout the body. Sepsis is a rapidly progressing, life-threatening condition that can cause shock and organ failure. Fusion of fingers and changes in the joints. Severe forms of epidermolysis bullosa can cause fusion of fingers or toes and abnormal bending of joints (contractures). This can affect the function of the fingers, knees and elbows. Problems with nutrition. Blisters in the mouth can make eating difficult and lead to malnutrition and anemia (such as low iron levels in the blood). Problems with nutrition can also cause delayed wound healing and, in children, slowed growth. Constipation. Difficulty passing stool may be due to painful blisters in the anal area. It can also be caused by not ingesting enough liquids or high-fiber foods, such as fruits and vegetables. Dental problems. Tooth decay and problems with tissues inside the mouth are common with some types of epidermolysis bullosa. Skin cancer. Adolescents and adults with certain types of epidermolysis bullosa are at high risk of developing a type of skin cancer known as squamous cell carcinoma. Death. Infants with a severe form of junctional epidermolysis bullosa are at high risk of infections and loss of body fluids from widespread blistering. Their survival also may be threatened because of blistering, which may hamper their ability to eat and breathe. Many of these infants die in childhood. Prevention It's not possible to prevent epidermolysis bullosa. But you can take steps to help prevent blisters and infection. Handle your child gently. Your infant or child needs cuddling, but be very gentle. To pick up your child, place him or her on soft material, such as cotton, and support under the buttocks and behind the neck. Don't lift your child from under his or her arms. Take special care with the diaper area. If your child wears diapers, remove the elastic bands and avoid cleansing wipes. Line the diaper with a nonstick dressing or spread it with a thick layer of zinc oxide paste. Keep the home environment cool. Set your thermostat so that your home remains cool and the temperature remains steady. Keep the skin moist. Gently apply lubricants, such as petroleum jelly. Dress your child in soft clothes. Use soft clothing that's simple to get on and off. It may help to remove labels and put clothing on seam-side out to minimize scratching. Try sewing foam pads into the lining of clothing by elbows, knees and other pressure points. Use soft special shoes, if possible. Prevent scratching. Trim your child's fingernails regularly. Consider putting mittens on him or her at bedtime to help prevent scratching and infection. Encourage your child to be active. As your child grows, encourage him or her to be involved in activities that don't cause skin injury. Swimming is a good option. For children with mild forms of epidermolysis bullosa, they can protect their skin by wearing long pants and sleeves for outdoor activities. Cover hard surfaces. For example, place sheepskin on car seats and line the bathing tub with a thick towel. 5 Likes |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by hadjipapiey(m): 12:41pm On May 11, 2019 |
madridguy: Yeepa! |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Sterope(f): 12:42pm On May 11, 2019 |
https://www.nhs.uk/conditions/epidermolysis-bullosa/ There isn't a cute for it yet. I supposed it can be managed. The best you can do is to research more about it, see a specialist and create a long term care plan for the baby. Also, you need to identify which of the parents carries the gene. It may help save a niece or a nephew yet unborn because going forward the affected people will need to consider prenatal testing for every pregnancy. Also, the other nieces, nephews and children should be tested. The ones that carry the gene should be mindful. You don't want a grandchild to suffer the same fate if science haven't found a cure by then. SPOILT9JAOLOSHO: 4 Likes |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by DonaTee(f): 12:42pm On May 11, 2019 |
SPOILT9JAOLOSHO: See à renowned dermatologist in a teaching hospital 1 Like |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Newmans: 12:50pm On May 11, 2019 |
People who surfer this kind of illness don't stay in light her parents should stop exposing her to sun light or heat of any kind, I have forgotten about it any way its been along time then, many years back, I .abroad not hear In Nigeria. 3 Likes |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Bheewhy(m): 12:51pm On May 11, 2019 |
My opinion Only God guarantee sound health and you need to be very calm and careful in your approach in order not to invite many self acclaimed doctors looking for opportunities like this to predate. Firstly, if the second baby that was fine is a male child then there is an high tendency that the mother is the one with the issue. Gene therapy would have be the best option but it is still at the infancy stage yet to be endorsed on safety ground while my suggestion will be to pray; look for supplement that improves skin attachment to add to the baby's feeding formula; maintain utmost hiegyne to prevent blister or wound exposure to frequent microbial infection;and possibly change her environment, maybe that might impact the phenotypic expression of the abnormality. All will be well with her! 8 Likes 1 Share |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by OdefaGirl(f): 12:52pm On May 11, 2019 |
hadjipapiey: You didn't read well Bro |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Benekruku(m): 12:53pm On May 11, 2019 |
There's currently no cure for epidermolysis bullosa (EB), but treatment can help ease and control symptoms. Treatment also aims to: avoid skin damage. improve quality of life. Only a miracle you need. My research about it, I cant share but will only tell you to pray to any God you serve. 1 Like |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by AngryParrot1: 12:57pm On May 11, 2019 |
Winners72: OK. No problem. Chat me up. Check out my signature. |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by OdefaGirl(f): 12:57pm On May 11, 2019 |
AngryParrot1: God bless u. More wisdom to u. 6 Likes |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Colberreky: 12:57pm On May 11, 2019 |
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Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Donchukz(m): 1:04pm On May 11, 2019 |
SPOILT9JAOLOSHO: Visit synagogue church of all nations and the root courses of it will be wiped out 2 Likes 1 Share |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Tending: 1:04pm On May 11, 2019 |
tttttre4e: WHAT THIS BABY IS PASSING THROUGH WILL BEFALL ON YOU. IDIOT |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Elliot2(m): 1:08pm On May 11, 2019 |
SPOILT9JAOLOSHO:Can u get a bottle of water? I will ask someone to pray for the baby,after then you bath her with the water and drink some. Let me know if you have gotten the water. 1 Like |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by kelechiodo(m): 1:09pm On May 11, 2019 |
AngryParrot1: Please do you have experience with Alzheimer’s disease (loss of memory) in a young person of 58 years 1 Like |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by abescom: 1:11pm On May 11, 2019 |
nduokoh01:I hate shameless people like you. You see what angryparrot1 wrote up there? He could have asked them to call like you did with eveil intention to rip them off like you obviously intend doing. 2 Likes 1 Share |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by chijos12: 1:15pm On May 11, 2019 |
The baby will be healed Do more research... 1 Like |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by AngryParrot1: 1:18pm On May 11, 2019 |
kelechiodo:Unfortunately I don't. But I have exposed myself about it. I will strongly recommend 3litre of Alkaline water daily for 6 months, and fruit smoothies daily for 3months. Only that the fruit smoothie will be costly. But this should help the nerves and brain cells. 2 Likes |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by viccgm: 1:21pm On May 11, 2019 |
Hello, this is genetic/pattern/root problem. No medical cure. Advice: If u are a Christian believer take the baby for genuine deliverance. God is the Almighty. 1 Like |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by dahmie2013: 1:28pm On May 11, 2019 |
Bring the children to canaan landd on Tuesday between 10-12am. It is our healing service, Jesus the healer will deliver them from that strange ailment. Matt 8:17 2 Likes |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by koolaid87: 1:29pm On May 11, 2019 |
It shall be well with you and your family Salute 2 Likes |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by ignatiuschinedu(m): 1:44pm On May 11, 2019 |
Call 08062881162 for one on one talk. 1 Like |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Realist1(m): 1:46pm On May 11, 2019 |
NAJALYN: I don't have any connection with this guy above though However,madam since it is a genetic disease I will strongly advice you to try stem cell treatment.I think the child's condition has a good chance of being cured or improving greatly using stem cell research/treatment .Good luck 1 Like |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by genabc(m): 1:54pm On May 11, 2019 |
It's a genetic disorder, for now it doesn't have a cure, children with this disorder are called "butterfly children" because their skin is as fragile as butterfly wings. Hence, you have to carry the baby with care, always clean ur hands. The truth is that daily wound care, pain management and protective bandaging are the only options available for people with EB. It's well with your family. 4 Likes 4 Shares |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by madgoat(m): 1:56pm On May 11, 2019 |
This is an opportunity for the family to become billionaires |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by Nobody: 2:12pm On May 11, 2019 |
All your sister or you need now is faith. Faith to make it happen for you, there is nothing totally nothing God can not do, if you only have faith in him. He did it for me, he can also do it for you. God is able to do the impossible. God bless you and let me pray for you. In the Name of Jesus I proclaim healing to her body, she is made whole from the crown of her head to the soles of her feet. LEAVE IN THE NAME OF JESUS. She's healed dear. You can also visit Healing school, Christ embassy to further your growth in faith. God is indeed a healer and he wants to heal that child as much as you want too. 1 Like |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by GeorgeTheCoder: 2:20pm On May 11, 2019 |
SPOILT9JAOLOSHO: In this case, deviation from orthodox treatment can lead to death. Continue her treatment at the hospital 1 Like |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by maasoap(m): 2:24pm On May 11, 2019 |
JubrinElSudan: Thank you, thank you, thank you. They have three healthy children already, why not opting for family planning? I think the problem was that they didn't know the first time that it was genetic or they are one of those "believers". |
Re: Epidermolysis Bullosa: Help Save My Sister's Baby With Solution To This Ailment by PharmJohn88(m): 2:25pm On May 11, 2019 |
SPOILT9JAOLOSHO: Medically, there seems to be no proven cure; therapeutically, there is a way to handle it; spiritually, Jesus is the only and the best cure. Epidermolysis Bullosa is fatal; if the first baby had was affected, the second didn't have, and the third has, it means it is a sex-linked and genetic disorder. If you visit a medical doctor, he would take the histories of both parents of that baby and trees it down to their individual maternity and paternity. The baby's tissues, organs and systems aren't well developed or grown enough to take in the different medications or therapies that will be prescribed. The parents should be treated and that will forestall its affecting the children yet unborn. There is a Dietetic I know and she can take care of this condition. Above all, have faith in God and pray much prayers; He has healed that baby already. 2 Likes |
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