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Living with Epidermolysis Bullosa
by Silvia C. & Brenda G.
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~Why the Wound Care Bill is Crucial!~


Real Testimonials From EB Families!

My daughter is 3 1/2 with DDEB. EB is a very serious condition with no cure. The only cure that we as parents have for our children is that of prevention through protection. Because my daughter cannot use over the counter bandages, her supplies must be ordered through a medical supplier which is quite costly. When my daughter was first diagnosed, we went through 3 stages of grueling appeals with a major HMO for wound care coverage only to be shut down within seconds. The horrible pictures of my daughters hands, knees, and toes, along with extensive letters from her specialists indicating the need for this coverage, made no impact on this heartless and hardened insurance company. My husband and I both work hard for our money and pay large premiums in health care coverage which made it even more disappointing to hear that our premiums mean nothing when it comes to caring for our daughter. We are fortunate now to have a new insurance that is absorbing a portion of these costs, however the out of pocket expenses for us are still quite high and insurance companies like ours are few and far between. Please pass this bandage bill to help EB families who are faced with daily decisions on how they are going to put food on the table after they incur the bandage costs to care for their EB babies.

Sincerely, 
Pam, Colorado

My husband and I have a 4 year old son with DDEB. Our son's wounds cover about 60% of his body.This disease is very Emotionally draining and when you put on the fact that most of his bandages aren't covered it really puts a strain on our family each and every month. Our son's dressings cost between $1,500 to $2,000 every month! This is the only thing that we have to help treat our son's wounds. Without dressings he would surely Die! This does not even cover other things that children with EB need. I pray everyday that a cure is around the corner. But, in the meantime we need help to cover these bandages that are so very expensive and VERY much an essential!

Sandy T., New York

I am the nanny of a baby boy with EB. I have learned to change his bandages and care for him in a very special way. You see, EB causes open wounds from the skin blistering. It can happen anytime, anywhere and the blisters must be popped with a special needle, cleaned and new dressings and bandaging applied. Before this job I only took care of "normal" babies. I had never heard of EB. Well without the right kind of bandaging he cannot leave his crib. Even there I have to be really careful he doesn't have anything there that could damage his skin. I have to pick him up from under his diaper because that has enough cushion not to tear his skin. He is a very happy baby but I know his pain. It hurts to have new teeth come in. It really hurts to have your mouth full of blisters and open sores when your teeth come in. Sometimes he gets blisters in his mouth. That is the only place I cannot bandage. I have had to learn how to wrap each little finger and hope it doesn't itch too much or he will try to scratch it. Then his skin will tear open. Now that he tries to walk his feet are blistered and have to be kept bandaged. You have to pass this wound care bill. Children will die if their wounds are not covered and kept clean all the time. The bandages and ointments are not paid for except for when the people I work pay. They have enough troubles with EB and the insurance company should pay for the supplies like they pay for other medicine. Thank you. 

Angie in California

I have 2 children that have RDEB. They both have blisters and open wounds all over their bodies. They need to wear bandages everyday from head to toe to heal their wounded skin and to protect the good skin they have left. For two children bandages can cost anywhere from $5000-$10,000 a month, and they are typically not covered by insurance companies. This is an unbearable cost for any family to have to endure. Please help us! 

Molly, Ohio

My best friend suffers not only PHYSICALLY as a result of EB, but FINANCIALLY as well. The bandages she uses as her ONLY means of treating her condition are expensive and are not covered by insurance.  The costs are impossible to cover for a single mother who is forced to miss work frequently due to her condition. Insurance covers treatments for all kinds of other conditions and since bandages are the only treatment for EB IT SHOULD COVER THIS EXPENSE!!!  Bandages are the TREATMENT for EB, not a luxury item!

Kourtney, Texas

My son and daughter both suffer from Junctional Epidermolysis Bullosa. There is no cure for this dreadful disease. My children require bandaging over 80% of their bodies due to open wounds and for protection of the skin. Bandaging supplies cost over $4000 a month and is not covered by any insurance. I have been placed in a hard spot whether to work or not work so my children can be covered by Medicaid for supplies and ultimately to keep them alive. If insurance companies were forced to cover wound supplies I would not be in the situation and could work and provide necessities for my family.

Cathy

The bandage bill is very important to these EB patients.  Insurance company's give me a run around about covering the costs and tell me that my son does not need them.  If my son could not be wrapped everyday his life could not be as normal as it is.  His bandages are an everyday part of his life just like a patient with a heart condition who needs their medicine, EB patients need theirs and that's bandages. Please don't forget about these courageous butterflies!

Whitney, Massachusetts

My daughter, Anna, was born with a genetic skin disorder called Epidermolysis Bullosa. Her type of the skin disorder is most severe following birth. During the first critical year of life, children like Anna need bandages to help keep them free from infection and to help heal their badly "wounded" skin.

In the first year of life, Anna had wounds similar to a burn victim covering 90% of her body. We were very grateful to be able to get her wound care products and bandages covered. Anna had to have her bandages changed daily - due to drainage from her wounds and something as simple as a bowel movement that would leak onto the bandages. 

It is critical that wound care supplies be covered. Today, Anna is doing quite well and rarely needs bandaging. Had she not received such good care and been bandaged properly in the first year of life, I cannot say with confidence that she'd be doing as well as she is today. Please make bandages accessible and covered for all people with Epidermolysis Bullosa. It will truly save you money in the long-term by keeping people healed as possible and protecting them from potential infection! 

Wendy 

Proper skin care & proper nutrition are the only treatment for my sons skin disorder called Recessive Dystrophic Epidermolysis Bullosa. Without them, he will get infections, have more loss of skin, suffer chronic pain and runs the risk of developing skin cancer. EB is a debilitating disorder that without aggressive AND proper skin AND wound care will lead to his death.

Imagine a burn victim not being able to cover their wounds and try to heal. Now imagine that every time the skin tries to heal, it sloughs off again, and again. Oddly, if a person were to go to an emergency room with large open wounds and infection, they would be taken care of. Bandaging would be supplied and applied, antibiotics given and depending on the severity of the symptoms, may even be admitted to the hospital. All those items covered because they were necessary. When the patient is deemed to be doing well enough to be discharged, they are sent home to care for themselves as best they can. 

Being without proper supplies at home because bandages are not considered necessary covered medical supplies… more infection, more sloughing of the skin another trip to the hospital. Doctors & nurses caring for this one person, bandages applied and the cycle continues. To me, that seems to add up to unnecessary medical expenses when, if the supplies were deemed necessary by the medical insurance entities and supplied to patients, those hospital trips would greatly decrease.

I speak of the above scenario from personal experience. Our son was born in 2000 with Recessive Dystrophic Epidermolysis Bullosa. Resuscitation, life support, neo-natal intensive care, ambulance ride, security guard, 24 hour doctor and nurse care, bandaging, drugs and the list goes on….and not an eye batted by the insurance entity. All was covered 100% without one question asked.

Upon our arrival at home, we had to supply the same level of care as a hospital, because Epidermolysis Bullosa is for life. Lo & behold, could I get the same bandages and ointments that the hospitals used on our son for use at home? Absolutely NOT! Those are unnecessary medical supplies! Thus began a 3 year battle with the insurance entity to give my son the right to life. Unlike like many people out there who think that they do not have a right to question such a decision by such an entity, I feel we have the right to the same level of quality care as other people who have ‘normal’ ailments that are considered covered expenses by said companies.

Why are patients affected with Epidermolysis Bullosa not afforded the same quality of life as those patients with ailments that may require pills or other ‘normal’ items are covered by the medical entities? Why can’t EB patients care for themselves at home just as properly as a hospital would treat them? Just because the insurance companies don’t hear of Epidermolysis Bullosa every day does not make it less important, less painful or even non-existent. It’s here and it needs to be addressed and cared for.

Please, there is no magic cure for Epidermolysis Bullosa. Proper skin care and nutrition are all that there is to help us live life as best we can with this disorder. I hope that you will think this through thoroughly and realize the long term savings to the medical insurance companies when proactive measures are taken to address this debilitating disorder versus reactive measures.

Carmen, California

Our grandson was born with EB. We had never heard of this before. We urge you to pass the wound care bill so that these people can have the supplies they need to stay alive covered. The wraps, bandages and assorted ointments can be purchased either over-the-counter or through medical supply houses. Rarely does an insurance company willingly agree to pay for these supplies simply because they deem them not "medically necessary". We beg to differ! If the blisters are not popped open and cleaned, treated and covered they will infect. Once this begins it continues on and on. Many patients end up with skin cancer and many die from it. From the big picture, covering what is very necessary will in fact save money for the companies that do not cover them now. All the trips to the ER. All the unnecessary infections and antibiotics and on and on. Please vote for this for our grandson and all the families who have someone with this horrible disease. 

David and Rose of California

I am a mom to a 6 year old boy who has RDEB. My son has to be bandaged from his neck to his toes. With out bandaging him everyday of his life he would not be able to survive. The bandages help to protect him from injury and infection. To care for him I have decided that I should be home with him leaving only my husband's income. Caring for a child with EB is very difficult emotionally but to add the cost of the bandages which can cost any where from $20,000.00 to $50,000.00 a year makes it even more difficult. The only treatment these children have is bandaging them every day of there lives to keep them alive. Families should not have to worry about the expense of the only treatment they have. Their focus needs to be on loving their children and doing the best they can to care for them. Please find it in your heart to pass this bill to help keep our kids alive. Thank you. 

Brenda, Connecticut

My Child Suffers from RDEB and the only treatment for this is to be bandaged from neck down. I would say that 50-60 % of his little 7 year old body is open wounds. Some families do not have this covered by insurance and it is very expensive, $1500-$2000 per month which is expensive no matter how much a family makes. This is the only treatment for this disorder. Please help us! Thank you!

Delicia, Pennsylvania

I have a friend who just had a baby, born in may 2005, and the baby has Epidermolysis Bullosa. In order for the family to afford medical supplies such as bandages and ointments, they are selling their household possessions! Insurance is not covering the costs of the bandages and whatever insurance did cover beyond the bandages had maxed out by the time their son was only ten days old! Please do some research on the disease and see how important it is to help out these families regarding the Bandage Bill. 

Sincerely, 
Kristina

My little cousin was born with EB. Nobody in our family knew what was wrong at first. Then the doctors tried to explain to the adults what he had. My mom has explained it all to me. You need to vote for this wound care bill. My cousin cannot go without his bandages or his skin will come off and then he gets infected and real sick. He always hurts but if the bandages are on he can try to walk and play with me and my brother. But we have to be real careful when we play. The bandages have to be charged because they get dirty and have his blood on them. Will you please help my cousin and other people with EB. Thank you.

 Michelle, California

My son has Recessive Dystrophic Epidermolysis Bullosa. His skin disorder demands constant bandaging. The cost of the bandages adds up very quickly and unfortunately there is no other option. There is only so much cost cutting and budgeting you can do, he needs his bandages. Without his bandages, he would get many more blisters and the damage to his body would be considerably worse. I wish he didn't have to wear bandages at all, but that's not a reality for us. What is a reality is the overwhelming price to attempt to keep him bandaged.

Cynthia

My son is 11 years old and has both arms and legs bandaged completely. He has Recessive Dystrophic Epidermolysis Bullosa. You probably have never heard of it, because I hadn't either until my child was born with skin missing. The only way to treat his condition is by bandaging him every day to try to heal the wounds he has and protect him from new ones (this is a never ending battle!) You should help by passing the bandage bill because you never know when it might be YOU that has a friend or relative who is suffering. Thank you for your help!

Dana, Texas

I have RDEB. My bandages cover about 50% my my body and they cost around $1,500 to $1,700 dollars a month. This bandage Bill NEEDS to be passed. They're so many people like myself out there that needs this as much as I do. I am 35 years old and I have struggled all of my life. Thanks.    

 Tonya 

We need the Wound Care Bill Passed, because most of us adults with EB live on SSI or SSDI, and unable to work or did work, but don't have the means to afford the cost of medical supplies or amount we must have each month, due to how severe our EB is. Medicare & Medicaid don't pay for ointments, a tub or 14 oz jar cost $10.00 to $20.00, I use 3 of these a month maybe more depends how good or bad my skin is at that time, it's a lot to pay when you live on a limited income. We shouldn't have to argue or fight so hard to get our medical supplies, takes enough of our time & energy taking care of our wounds daily, but when we get denied from Medicare, Medicaid or insurance companies, takes that much time, effort & energy to argue to our medical insurances when we don't need that added stress in our lives as it is to get the medical supplies we need. There are certain type of dressings that the reimbursement isn't that great, and unable to get, because the medical companies will not allow us to order because Medicare & Medicaid don't pay enough back on the type of dressing. We didn't ask to be born with EB, but we have it and we're doing the best we can, you need to help us get the Wound Care Bill Passed to make our lives easier, the local, state & private insurances aren't making it easier, it's a lot of heart ache on top with all the wounds, infection, and talking for myself, I have had two cases of Squamous Cell Carcinoma, a very high & deadly risk us severe EBers have. I ask you to pass & approve all medical procedure us EBers face, as well all the types of medical supplies we need across the board, no matter what kind of insurance we have, from Medicare, Medicaid, and private insurance....Don't delay or put us off any longer, pass this Wound Care Bill Today!!!!

Sincerely,
Bruce, Indiana

I am a firm supporter of the bandage bill. My son suffers from Epidermolysis Bullosa and he needs
bandages constantly and all over his body, similar to the way other ill people need prescription drugs.
Please don't let sufferers of this rare disease slip through the cracks, especially as many of them are
babies and children. If our insurance can cover the bandages, his chances of survival increase greatly,
and his quality of living will certainly improve.

Yours sincerely,
Andrew

My daughter was born with Junctional Epidermolysis Bullosa. Thirty percent of her skin was covered in blisters that needed protection. The only treatment for this condition is bandaging, which was extraordinarily expensive at almost $1600 a month. Fortunately, our insurance covered 80% of this cost, but even 20% was an overwhelming cost for us and would have bankrupted us long-term had Jordan not died at age three months when her EB involvement went internally. Most families whose children have EB do not have the luxury of insurance that covers any bandages. Simply, we want to keep our children alive, and bandaging, which is often prohibitively costly, is our only weapon against this horrible disease.

Mandy

My child has Junctional EB and wounds cover her feet, knees and hands and occasional other places on her body depending on the season, the activity level and other factors. Her feet and knees need to be bandaged not only to protect her from getting new wounds, but also to protect her current wounds and allow them to heal properly. Bandage costs are outrageous and not covered by our health insurance. It costs anywhere between $100-$150 a month to keep our daughter comfortable and bandaging is the only treatment this condition has. We need help! 

Thank you,
Brenda

My granddaughter Jennifer died on May 18, 2005 from the horrible disease, Epidermolysis Bullosa (EB). She was 25 years old. Can you imagine a young lady with no fingernails to paint, cannot wear make-up, has wounds in her hair so that hair falls out, and is covered with bandages from head to toe. There is NO CURE. Only treatment - and that treatment is BANDAGING AND BATHS in Dakin Solution (that is saline water and bleach) to kill the bacteria so as not to have infections. Infection kills most EBers. The skin is the cover that keeps the body from getting infections. The wounds, open wounds, like burns or blisters (which they are) need to be covered and medicated. They need extra protein for nutrition. The insurance companies refuse to include these bandages in their policies. Medicare does not pay for any wound care items. Medicaid makes you jump through hoops, along with documentations from the physicians. Most physicians and nurses do not even know about EPIDERMOLYSIS BULLOSA (EB). Why do they not teach it in the medical schools. They just "touch" on it because the doctors have told me that. You need to really investigate it AND PASS THIS BILL, so that we can have coverage also, like the diabetics. It is soooooo life saving, that we treat this disease, and we cannot, due NO INSURANCE COVERAGE. PLEASE PASS THIS BILL.....

Shirley (grammy of Jennifer), Florida

I am the mother of a 1-year-old with DDEB. Our son's EB has fortunately been very mild. However, we still need to purchase bandages and other supplies to protect his fragile skin. If we don't, his skin blisters. If you've ever had a blister from a new pair of shoes, you know how much it stings. Imagine if you had that pain over 80% of your body? Insurance companies should not have the "option" to deny coverage. There is no cure for EB. You can only treat the blisters/wounds through bandages. Bandages are a necessity, NOT a luxury. The necessary supplies can cost upwards of $5000 per month! Taking care of a child with this pain is emotionally draining, it shouldn't have to be financially draining as well. 

Stephanie, South Dakota

Both our children where born with EBS-DM, the most severe form of simplex. By the time my daughter was 4 months old, she was missing between 75%-80% of the skin on her body. The only way to protect her was to wrap her in bandages from head to toe. We had to change the bandages daily otherwise her wounds would be come infected and we'd end up back in the hospital which costs a heck of a lot more than her wound care supplies. We would spend $3500-$4000 per month on wound care supplies. Our insurance at the time, covered 80%, and we'd pay 20%, which was still a lot of money. Then we ran into the issues of the medical supplier cutting us off because they weren't getting reimbursed enough to cover their costs. Then we were stuck with pay for her supplies on our own. 2 1/2 years later when our son was born, our insurance at the time DID NOT cover any wound care supplies at all. We had no idea how we would be able to get all this supplies when we came home from the hospital. We even had to fight with the hospital to order the supplies for him while he was still in the PICU. Unfortunately, we never made it that far. He died at 12 days old from an infection he got in the hospital from not having the proper supplies in time. This bill NEEDS to be passed!!! It is a matter of life and death in some cases for those with EB. 

Sincerely,
Joseph and Sara, Florida

I am the foster mother of a 5 month old baby with RDEB. The baby is covered by Medicaid in our state of Washington. This baby has a great deal of large blisters on the trunk and has lost most of the skin on both feet and hands. It has taken us 4 months to get even the most basic wound care supplies. What we have spent out of our own pockets is well over $3,000. We have experienced several infections and trips to the ER, and I believe much of this is due to the lack of proper supplies. This doesn't even touch the additional suffering this baby is put through because these supplies are not adequate for care. I realize that most people do not understand the significance of this disease. This baby, as well as all the other EB sufferers and their families cannot cover these expenses on their own. We need this bill passed. 

Jean & Larry Nolet, Washington State

My name is Linda and I have a beautiful grandson with EB. He is 16 months old and doing well, but I have met other children who have more severe cases of EB. When one of these children has a wound it needs to be treated right away and covered to prevent infection or becoming larger. They also have to wear protective covering to prevent the blisters from forming. All of this equates to added expense which insurance does not cover.

Internal blistering causes problems with breathing or eating. Over the past 3 months, 4 children have died within the support group my son and daughter-in-law belong to. This saddens all of us. Please consider helping these children through awareness, congressional action to change insurance coverage or donations to the EB foundations.

God’s Blessings to all of these children and those who are trying to find a cure!!

Linda, Iowa

I am the aunt of a 21 month old boy named Brandon. Brandon was born with Epidermolysis Bullosa or EB for short. The blistering of his skin is unimaginable. Without constant bandaging and wound care he will continue to get one infection after another. His insurance company will only pay for what THEY feel is medically necessary although the medical examiners usually have never heard of this disease. If his blisters are not popped each and everyday they will only spread into a larger blister. These are extremely painful and cover most of his body. Try to imagine a terrible burn and not being able to keep it covered. Often times these wounds turn into staph infections and spread. The wounds must be kept clean at all times which require frequent bandage changing. His parents carry all the necessary supplies and syringes to pop and clean him wherever they are. The costs for supplies can run anywhere from $2,000.00 a month on up depending on the weather and his overall health. He has no fingernails and will need surgery on his feet because the blisters will never end. Ever try to tell a baby not to cry while you and 2 others try to wrap each finger? What should be a pleasant experience such as bath time is a living hell. Ever take a bath with bleach to kill bacteria and then just when you think he will settle down you need to re-wrap him from head to toe all over again? The Wound Care Bill is a must. Families who suffer from this horrible disease have it hard enough. All forms of insurance must allow the medically necessary bandages and supplies to be covered just as they would if it were in a hospital setting. In some cases, families struggle with the overwhelming costs of un-covered supplies and try to re-use the bandaging. This is unacceptable. The chance of infection increases and if the wounds continue to re-infect in many cases these poor individuals die of skin cancer. There is no cure to date although researchers at Stanford Univ. are working towards one. In the meantime all wound care supplies for those suffering from EB must be covered. I urge you to visit the various websites and see for yourselves what we already know is a medically necessary form of treatment. Please vote with your heart. In the long run this bill will actually save insurance companies money.

Thank you,
Dennise, California

Please pass the Wound Care Bill. Very few insurance companies cover the cost of over-the-counter supplies such as ointments and bandages. Without these supplies people with Epidermolysis Bullosa can die. They get blisters that must be opened, drained and covered right away. If they are kept open the people get very serious infections. The infections often happen in the same place over and over again. Many times the more serious types of EB lead to deadly skin cancers. The pain these people, many whom are infants and children, is round the clock. Many need round the clock care. The cost for these supplies can run into the thousands per month depending on the amount of blistering and even the weather changes. People with EB have a tough enough time just trying to either bandage themselves or their children. Do you know what it would be like to have third degree burns and not have the necessary wrappings to cover it. This is all medically necessary for those with this horrific often deadly disease. I beg of all of you to vote this into law and help your fellow suffering Americans. Thank you for your attention in this very important matter. 

Kyle, California

To Whom It May Concern:
I am 52 years old. I was born with RDEB. I have two siblings also born with RDEB. There is no cure. None of us finished school. We missed a lot of school because there were days we just did not have the bandages to wrap up with to be comfortable and safe in a school environment. As adults with the less severe form of RDEB we tried to hold down jobs, finding this also to be difficult without the proper bandages for this skin condition. Without insurances helping supply these needed bandages we suffer physically and monetarily. Those of us that are on SSI or SSDI can ill afford all the supplies we need. These needed supplies are not a "cure", they are necessary supplies to treat this life long debilitating rare skin disorder. We need your help!

Kathleen, Massachusetts

This is a plea for those that can make a difference. The wound care bill is extremely important, and will help EB families immensely. Personally, I have RDEB, and I am 32 years old. I have had to purchase my own wound care products for as long as I can remember.  This is of course a huge financial burden. Bandages and other wound care supplies are needed for all of us who have EB. We have no other choice but use these extremely expensive products to ensure our wounds heal and we don't get sick.  I am lucky, there are patients in much worse shape than me that need many more products, but just like them, wound care products are our livelihood, it's like food for normal people, without it, we die.  I am covered with blisters and wounds all over my body.  Without medical products for wound care, these areas become infected and they are extremely painful. Since the number one killer of EB patients is infection, you can see how important these items really are.  These items are not optional for EB patients.  They are 100% medically necessary. The wound care Bill is very important and will save many families from financial ruin. Many families live in very poor conditions because they cannot afford to buy a house or rent a nice place because they spend all their money in bandages. PLEASE HELP US!! Thank you for your time.

Barbara, Wisconsin

I am the grandmother of two E.B. children. Brandy is three and  Baby Kevin was nine months young when he passed away. I have nine kids of my own ranging from thirty-one to five... I HAD NEVER HEARD of Epidermolyosis Bullosa in all my life {and ALL my kids} until the sweet ones I mentioned above were born and diagnosed with it...???!!!!!! I so want to DO SOMETHING !!! I am monetarily a poor indivdual and feel that no matter how hard I pray it does NOT  take the pain and fear and suffering away from all the precious people it affects. NEVER fear about my 'giving up' praying, because I won't, can't nor don't. It seems the ONLY thing I CAN do.  May God Bless, Sincerely,

E.B. Grandma, Illinois

I am a 41 year old that was born in California and was diagnosed with EB. I was a million dollar baby 41 years ago because they didnt know what I had. I was also bandaged from my neck to the tips of my toes. I looked like a baby mummy.
 
I am thankful everyday that I dont have to have to be bandaged. I still get blisters but not as bad or as amnay as I did when I was younger. About every 5 years I get a bad break out in the summer. I do work full time but find it hard sometimes on my hands and feet becasue I am a Bank Manager and work alot with my hands and on my feet alot.
 
I look at these pictures and read these stories and just cry seeing and reading about these children because I know what they are going thru and feel their pain.
 
This bill needs to be passed ASAP so that these children can grow up to be my age and have some sort of a normal life.These politicians and insurance companies need to spend a day with an EB patient to see what they go thru or god forbid EB affects their families and then they will know what all these children and families go thru.
 
Thank you and I say a prayer for all of you every day.

Lisa, Pennsylvania

I am a single mother of 2 children.  My 7-year old daughter has RDEB.  When she was first born, my insurance did not cover a cent of her dressings and I remember how costly the supplies were to keep her tiny body covered.  I was fortunate enough to switch insurance companies and now her dressings are covered at 80%--still leaving me with high out-of-pocket expenses. 
Even with all the wound care and bandaging, Sarah's skin has deteriorated to the point that if she were not bandaged, she probably would not survive.  Her wounds are large and widespread and are often infected.  I often wonder what I would do if I would lose my job or if my current plan would be eliminated and I would be forced into an insurance plan that does not cover bandages.  It is a terrifying thought and yet, it has happened to many EB families that are now paying for these critical supplies out of their pockets.
Please pass the bandage bill so that all families affected by EB can care for their loved one(s) appropriately.  These bandages are not optional...they are detrimental.  Our children suffer enough to do without bandages because their families can't afford them. THANK  YOU!

Maria, NJ

 

Would you like to share your thoughts on why The Wound Care Bill is CRUCIAL? You can email Silvia
here
... make sure to tell her the STATE you live and don't forget to send her a picture too!
 

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