Caregiver Selection Checklist


Many of us after learning of an EB diagnosis of a child must then take on the responsibility of becoming a primary caregiver for our loved one, either alone or with our partner or another family member. Sometimes, however, it becomes necessary to bring a third-party caregiver into the home. If you have not been faced with making such a decision before for another family member such as a parent or grandparent, it can be a daunting one.

Here is a brief list of suggestions to get you started as you pose questions of potential candidates and do your research:

  • Check with your physician or other specialists who are involved in your child’s care for any recommendations they may have.
     
  • Contact your local chamber about any medical facilities or caregiver organizations based in the area as another resource worth investigating further.
     
  • Ask friends or other family members who may have selected a caregiver for a relative in the past for some basic advice on making the selection, keeping in mind that their caregiver may not have faced the same types of challenges as an EB caregiver will need to endure.
     
  • Talk to other EB families online for their own input on selecting a third-party caregiver, such as here in the EB Resource forum or other online communities you may be a part of.
     
  • Reach out to other care experts for any other advice on the caregiver selection process such as the DebRA nurse, a national caregivers’ support network or contacts you may have at a medical facility where your loved one may have received care.
     
  • Ask the caregiver for references specific to working with those facing rare diseases and someone in your loved one’s age group.
     
  • Explain what you can about epidermolysis bullosa to the caregiver candidate and ask them to do some homework on their own about EB, arranging for a discussion a week later to gauge how well they understand what this disease will entail for the care process and the emotional toll it can take on the patient, the family members and the caregiver.
     
  • Request information specifically about wound care experience and background, and inquire about what wound care suppliers they are familiar with.
     
  • Ask for their expectations as a caregiver and be sure to communicate yours openly and thoroughly during the interview process.
     
  • Make a point for your significant other and any other family members involved in the care process to meet the potential caregiver and be involved in the interview process.
     
  • Give your loved one an opportunity to interact with the potential caregiver to not only see that candidate’s communication style and “bedside manner” but also to see your loved one’s own reactions to the candidate.
     
  • If your interview process is a positive one, suggest a trial basis of a few days or a week to test the new caregiver relationship.

These are just a handful of suggestions and by no means, a complete list. Perhaps you can offer some tips of your own for this selection checklist. What are some other key questions or areas of inquiry that you suggest to someone looking to hire a third-party caregiver for their loved one diagnosed with EB?

Hollister Wound Supplies 101: Endoform dermal template

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.

Hollister Wound Care recently announced its newest wound care offering, the Endoform dermal template. It has been designed to deliver the strength of a dermal template with the simplicity of a collagen-based dressing. It is derived from an ovine (sheep) source, and is composed of 90% collagen and 10% intact, native extracellular matrix (ECM).

We thought we’d take this time to answer a few basic questions about the new wound care alternative.

What is ECM?
An important element in living tissue is the ECM. It serves multiple functions, which include regulating intercellular communication and providing structural support to help tissue repair.

What benefits does the Endoform dermal template offer?
Endoform dermal template demonstrates broad spectrum matrix metalloproteinases (MMP) reduction, which we’ll discuss in more detail shortly. It is available to healthcare providers across the continuum of care.  It can be used to treat acute and chronic wounds and may be reimbursed under the collagen HCPCS A Codes. Another key advantage that it can offer EB families is its cost-effectiveness because re-applications can be made as little as once per week.

How is the collagen in Endoform dermal template different from collagen/ORC dressings?
Processed collagen//ORC dressings contain a denatured matrix structure. Endoform dermal template retains the structure and function of the native ECM. 

Why is broad-spectrum MMP reduction relevant?
Chronic wounds typically show high levels of certain MMPs. These MMPs can sequentially degrade the native ECM, delaying wound healing. To reduce excess MMP activity, collagen dressings provide a sacrificial substrate. Endoform dermal template demonstrates broad-spectrum MMP activity reduction. Reduced MMP activity may contribute to better wound healing.

If you would like more information about the Endoform dermal template, please contact me at leslie.rader@hollisterwoundcare.com.

Sources: EB Dressing Products, Hollister Wound Care

  • HCPCS Codes A6021, A6022 collagen dressing.
  • Negron L, Lun S, May BC. Ovine forestomach matrix biomaterial is a broad spectrum inhibitor of matrix metalloproteinases and neutrophil elastase. Int Wound J. 2012 Nov 1.
  • Endoform Dermal Template Instructions for Use.
  • International consensus. Acellular matrices for the treatment of wounds. An expert working group review. London: Wounds International, 2010.
  • Medicare Local Coverage Determination (LCD) criteria requires the wound to have been present for a predetermined number of weeks and to have failed to respond to documented conservative measures prior to authorizing reimbursement on more advanced wound therapies such as skin substitutes. Number of weeks varies by region.
  • Lun S, Irvine SM, Johnson KD, Fisher NJ, Floden EW, Negron L, et al. A functional extracellular matrix biomaterial derived from ovine forestomach. Biomaterials 2010 Jun;31(16):4517-4529.
  • Schultz GS, Mast, BA, Molecular Analysis of the Environments of Healing and Chronic Wounds: Cytokines, Proteases, and Growth Factors. Primary Intention. February 1999.
  • Schultz GS, Ladwig G, Wysocki A. Extracellular matrix: review of its roles in acute and chronic wounds. World Wide Wounds. August 2005.

What to Know When Using Restore DUO Dressings

*Seek advice from your licensed healthcare professional in regards to your healthcare needs

It’s time again to examine another wound dressing option to offer additional product information, help educate caregivers and provide an opportunity for users to pose any questions they might have about the product. This time around, we look at Hollister Wound Care‘s Restore® DUO Absorbent Dressings, non-adhesive.

Here are a few things that you should know about DUO dressings before using them:

· Ideal for Low Exuding Acute and Chronic Wounds.
The layers of DUO dressing are as absorbent as using 2-3 gauze pads. Having all of that absorbency compacted into one wound dressing enables you to change dressings less frequently (every 1-3 days), which can reduce overall dressing time and pain associated with some types of dressings for the patient.

· The Material’s Flexibility Allows for Conformability.
DUO dressings are flexible and conform to the wound bed and body contours, enabling safe contact with the wound and surrounding tissue without creating any additional damage to the skin. By not disrupting or aggravating wounds that are in the process of healing, the dressing supports the patient’s recovery process.

· Super Absorbency in a Comfortable Package.
Restore DUO dressing offer so much absorbency and flexibility, yet its layers are assembled in a thin, soft package that doesn’t feel heavy or cumbersome to the patient yet still provides solid, compact support of the wound healing process.

· Dressings Feature TRIACT Technology.
TRIACT Technology is made up of a lipido-colloid matrix that forms a gel when exudate is present, which provides a moist healing interface between the wound and the dressing. The non-occlusive fine mesh reduces the potential for microfibers to shed in the wound, which in turn means a lesser chance of damaging newly formed skin near the wound and less pain for the patient throughout the process. DUO dressings are especially helpful when the periwound skin is too delicate to risk exposure to any kind of adhesive dressing.

· Counterindications.
Restore DUO dressings should not be used on individuals who are sensitive to or who have had an allergic reaction to the dressing or one of its components.

If you have any questions about Restore DUO absorbent dressings or use of them, please contact EB Coordinator Leslie Rader at 1-888-EBAID4U or by email at leslie.rader@hollisterwoundcare.com.

What to Know When Using Restore® Foam Dressings

*Seek advice from your licensed healthcare professional in regards to your healthcare needs

In an effort to provide information to EB patients and their caregivers about the different options for wound dressing, we take a closer look at one of Hollister Wound Care’s signature products, its Restore Foam Dressings.

Here is some helpful information you should know about this particular dressing alternative:

  • Foam dressings are best used for moderate to heavily exuding wounds.
    Patients who generally benefit most from this dressing option are those who experience chronic wounds such as pressure ulcers, leg ulcers or diabetic foot ulcers, as well as patients with acute wounds such as partial thickness burns, dermabrasions, traumatic wounds and post-operative wounds. Restore Foam Dressings also can be used underneath compression bandaging.

  • Like Restore Contact Layer Dressings, Restore Foam Dressings are designed using TRIACT® Technology.
    Through TRIACT Technology, a gel forms when exudate is present and helps prevent sticking and disruption to the wound bed when dressings are removed.

  • Restore Foam Dressings enable absorption of exudates to shield skin from maceration with a virtually pain-free solution.
    With Restore Foam Dressings, exudate passes through a contact layer into a super-absorbent foam pad that enables vertical drainage, protecting the lesion’s surrounding skin from excessive softening. Because dressings with TRIACT technology are non-adhesive and not greasy, they’re easy to apply and remove without sticking to the wound. With the dressing’s pliability and soft, conforming backing, it easily shapes itself to the contours of the wound.. Restore Foam Dressings are especially effective for use on wounds with fragile surrounding skin.
  • Restore Foam Dressings allow for more convenience with fewer changes required.
    Unlike other dressings which may need to be changed every day or every other day, Restore Foam Dressings may be changed every 3-4 days, depending on the nature of the wound and its healing status.
  • An optional Restore Foam Dressing with Silver continuously releases silver to fight bacteria such as MRSA.
    In Restore Foam Dressings with Silver, silver sulfate is locked within the dressing and as exudate is absorbed by the dressing, silver sulfate molecules release silver ions. In-vitro studies have shown that continuous silver release sustains anti-bacterial activity for up to seven days, fighting such common bacteria as Staph, Streptococcus pyogenes and MRSA.
  • Some individuals should not use Restore Foam Dressings or Restore Foam Dressings with Silver.
    Individuals who are sensitive to or have had an allergic reaction to the dressing or one of its components should not use Restore Foam Dressings.

If you have any questions about either of these products or usage of them, please contact EB Coordinator Leslie Rader at 1-888-EBAID4U or by email at leslie.rader@hollisterwoundcare.com.

What to Know When Using Restore® Contact Layer Dressings with Silver

*Seek advice from your licensed healthcare professional in regards to your healthcare needs

Last week, we launched a new series to highlight different wound care supplies to share helpful pointers for using Restore Contact Layer Dressings. This week, we take a closer look at the Restore Contact Layer Dressings with Silver and important information you should know before using.

  • Restore Contact Layer Dressings with Silver dressing are designed with TRIACT® Technology.
    Like Hollister Wound Care’s Restore Contact Layer Dressings, the Restore Contact Layer Dressings with Silver also use TRIACT technology, which means that while the outside dressing material is made of a fine polyester mesh, the inside of the dressing uses an advanced, patented petrolatum-based formula to help prevent sticking and disruption of the healing process during dressing removal. Silver sulfate is added to provide a slow and constant release of ions.
  • Restore Contact Layer Dressings with Silver may help reduce infection in light to moderate exuding wounds.
    Restore Contact Layer Dressings with Silver work best with second degree burns, pressure ulcers, venous stasis ulcers, diabetic ulcers and graft and donor sites. The silver dressings may be used on infected wounds only under the care of a healthcare professional.

  • Dressing flexibility means virtually pain-free dressing removals.
    When wound exudate comes in contact with the dressing, the hydrocolloid particles combine with the matrix to form a “gel,” providing a moist environment that promotes healing. Restore Contact Layer Dressings with Silver gives a virtually pain free dressing removal and helps minimize damage to newly formed surrounding skin.  It is ideal for use on wounds with fragile surrounding skin.
  • Continuous release of silver in Restore Contact Layer Dressings with Silver can fight bacteria such as MRSA.
    In Restore Contact Layer Dressings with Silver, silver sulfate is locked within the bandage.  When the dressing comes in contact with wound exudates, the silver sulfate molecules release silver ions. In-vitro studies have shown that continuous silver release sustains anti-bacterial activity for up to seven days, fighting such common bacteria as Staph, Streptococcus pyogenes and MRSA.
  • Restore Contact Layer Dressings with Silver may require more frequent changes than dressings without silver.
    For Restore Contact Layer Dressings with Silver, it is recommended to change the dressing every one to three days depending on the wound and the healing progression.  Duration of treatment is determined by the physician and depends on wound type and healing conditions.

  • Some individuals should not use Restore Contact Layer Dressings with Silver.
    This applies to individuals who are sensitive to silver or have had an allergic reaction to the dressing or one of its components. Hollister Wound Care has a broad range of dressing alternatives.

If you have any questions about this product or use of it, please contact EB Coordinator Leslie Rader at 1-888-EBAID4U or by email at leslie.rader@hollisterwoundcare.com.

What to Know When Using Restore® Contact Layer Dressings

*Seek advice from your licensed healthcare professional in regards to your healthcare needs

From time to time, we’ll be sharing helpful information about various wound care supplies –such as when they’re best used and important things you should know when using them. We kick off this regular series of medical supply-focused blogs with some pointers for using Hollister Wound Care’s Restore Contact Layer Dressings.

Some helpful information you should know:

  • Dressings are designed using TRIACT® Technology.
    TRIACT Technology is comprised of a lipido-colloid matrix that forms a gel when exudate is present.  The gel helps prevent sticking and disruption to the wound bed during dressing removal.  What this means for the patient is the dressing removal is virtually pain-free.
  • Contact layer dressings are best used for low to moderate exuding wounds, including wounds associated with EB.
    Restore Contact Layer Dressings work best with minor abrasions, lacerations, leg ulcers, diabetic ulcers, pressure ulcers, skin tears, second degree burns, traumatic wounds, surgical wounds, and minor cuts, scalds or burns. Other Restore dressings with TRIACT technology are available for more serious skin wounds that are exuding more heavily or steadily.
  • Dressing flexibility means virtually pain-free dressing removals.
    Because dressings with TRIACT technology are non-adhesive and not greasy, they’re easy to apply and remove without sticking to the wound. When wound exudate comes in contact with the dressing, the hydrocolloid particles combine with the matrix to form a “gel,” providing a moist environment that promotes healing. Restore Contact Layer dressing gives a virtually pain-free dressing removal and helps minimize damage to newly formed surrounding skin. It is ideal for use on wounds with fragile surrounding skin.
  • Standard dressings require minimal changing.
    Most EB families change dressings everyday or every other day depending on the type of wound. If need be, Restore Contact Layer Dressings may be worn for up to seven days. Caregivers will have fewer dressing changes to make and again there will be limited disruption of skin healing process.
  • Some individuals should not use Restore Contact Layer Dressings.
    This applies to individuals who are sensitive to or have had an allergic reaction to the dressing or one of its components. Hollister Wound Care has a broad range of dressing alternatives.

If you have any questions about this product or use of it, please contact EB Coordinator Leslie Rader at 1-888-EBAID4U or by email at leslie.rader@hollisterwoundcare.com.

A Look Ahead at EB Awareness Week

Each year, the last week of October is National Epidermolysis Bullosa Awareness Week, as declared by Congress in late 2006, a bill designed to raise public awareness and understanding of the disease and foster support for parents and families feeling its impact.

 

Here is a list of a few upcoming EB-focused events being held in honor of the week to raise funds for EB research and promote awareness of the rare disease:

 

  • Saturday, October 24: New Baden “Walk a Mile in My Shoes’ EB Awareness Walk
    2pm at New Baden Town Park (New Baden, IL)
    Attendees can take part in the EB Awareness Walk and stay at the park for a full afternoon of family activities to follow from 3-10pm at the New Baden Annual Chili Cook-off. For additional information, go to the event site (http://www.newbadenil.com/Chili-Soup%20Cook-off.htm) where you can also download pledge sheets to raise money for DebRA or contact walk organizer Jennifer McCaughtry directly at (618) 588-5053.
  • Sunday, October 25: 1st Annual EB Awareness Walk
    Time TBA at Chastain Park (Atlanta, GA)
    Supporters can sign up for the debut of this EB awareness walk inspired by 3-year-old Ellie Tavani and organized by parents Andrew and Shawn Tavani to raise awareness and funds for DebRA. To get involved or lend your support, contact Shawn at srtavani@yahoo.com and become a member of the Butterfly Wishes for Ellie group on Facebook (http://www.facebook.com/group.php?gid=24224015944).
  • Sunday, October 25: Wings for Layla Walk for EB
    11:00am at Sheboygan North High School (Sheboygan, WI)
    Participants can take a 1-mile indoor track walk, enjoy lunch and participate in a raffle and silent auction. Money raised will go to DEBRA as well as ongoing medical expenses for the Nick Family and daughter Layla diagnosed just this January with EB. To show your support or take part, go to www.wingsforlayla.com for details.
  • One in a Million, a student-led organization at the University of Miami focused on providing information about rare genetic diseases, is hosting a week of activities and fundraisers planned and open to the public, including:

–   Monday, October 26: Epidermolysis Bullosa Forum
8:00pm at the University of Miami Learning Center (Miami, FL)
Visitors can learn about EB and different treatments from guest speakers.

–   Tuesday, October 27: Epidermolysis Bullosa Banquet
8:00pm at the University of Miami University Center Ballrooms
Guests can enjoy a free semi-formal dinner while learning about EB from the evening’s guest speaker.

–   Wednesday, October 28: Walk for Epidermolysis Bullosa
8:00pm at Stanford Circle
Participants will be walking throughout the University of Miami campus, to be followed by an evening breakfast.

–   Thursday, October 29: Halloween Party
9:00pm at University of Miami Communications Building Courtyard
Attendees should don their very best Halloween costume to compete in a contest and stay for the party.

–   Friday, October 30: Closing Ceremonies
Noon at The Rock on Stanford Drive
Guests can be part of a short closing ceremony during which butterflies will be released. The event is followed by an ice cream social at 3pm.


If you have any questions or would like to RSVP for these events, email the organization at oneinamillionum@gmail.com.

 

If you and your family are hosting or participating in any local events or fundraisers being held during EB Awareness Week, please let me know so we share with the rest of our online community. You can reach me at 502-299-0862 or by email at leslie.rader@hollisterwoundcare.com.

 

And remember: one of the most powerful things you can do this year to support the efforts of National EB Awareness Week organizers everywhere, especially as an EB family member, is to spread the word about EB far beyond your home. Share the significance of National EB Awareness Week and what it truly means to your neighbors, your friends and co-workers. Reach out to your local, state and national elected officials and remind them that with their formal declaration to recognize the week publicly before their constituents, they can help raise awareness for this still relatively unknown genetic disease. DebRA has a great resource page of government links and sample letters to help you get the word out to those in public office. (http://www.debra.org/modules.php?op=modload&name=News&file=article&sid=59)

 

Thanks for being one more voice out there for EB awareness.


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Partnering to Raise EB Awareness

We’ve developed some valuable partnerships with EB care professionals and the facilities they represent. But the most significant relationships Hollister Wound Care has been able to build are those with the patients and their parents who use our products on a daily basis, families like yours, who tell us how you use the wound care supplies, what works and occasionally, what doesn’t. It’s because of this critical ongoing dialogue that we carry on with EB families that’s allowed us to gain a greater understanding of the urgency to develop better treatments and better yet, a cure for EB. As a company, we’ve always felt our primary purpose is to find solutions to improve patient care, comfort and dignity, so we know it’s especially important to work side-by-side with the principal lead organization in Epidermolysis Bullosa research. Our closest relationship is with DebRA, the Dystrophic Epidermolysis Bullosa Research Association of America, the only non-profit for EB that provides programs and services for the EB community.

 

At Hollister Wound Care, we’re always seeking new ways that we can support DebRA and the EB families it serves, and that means getting involved in the community to raise awareness for EB research and support the services and informational resources DebRA is able to offer families facing this challenging disease. And we’ve found some pretty creative ways to do this.

 

  • Hollister Wound Care will be serving as Title Sponsor for the second year in a row for the 11th Annual Mats Wilander Celebrity Tennis/Golf Classic being held October 19 in Rye, NY. Once again, the tennis legend and his young son Erik who suffers from a mild form of EB will host this annual tournament which has become a signature fundraiser for the association, so we’re really proud to be a part of this special event again. You can find out more information about the event by going to this site: http://debra.org/celebrityclassic/index.php.
  • For the last three springs, Hollister Wound Care has sponsored the Butterfly Benefit in Louisville, KY, an event I started in 2005. It features a fashion show, luncheon and silent auction which benefits DebRA’s New Family Advocate Program.
  • Another unique way we’ve been able to show our support is by our sponsorship of Mrs. Ohio Pageant participant Lindsey Gregg whose platform was raising awareness of EB. (She was later crowned Mrs. Ohio, and we supported her again in her run for the Mrs. International Pageant title.)
  • Hollister Wound Care lends its sponsorship support to a number of regional and local events, too. These include Slopes for Hope held this past March in Denver, CO, with proceeds benefiting the financial assistance fund at the Children’s Epidermolysis Bullosa Clinic, and an Ice Cream Social at the Have a Heart for EB event held earlier this February in Orlando, Fl.

  

If you are organizing an upcoming EB fundraiser, let us know. You can call me, Leslie Rader, at 502-299-0862 or email me at leslie.rader@hollisterwoundcare.com. All of us on the team here at Hollister Wound Care would love to hear about what you’re doing to raise awareness for EB.

EB Website

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Welcome to a Unique EB Community

Being the parent of a child living with Epidermolysis Bullosa (or EB as it’s most known) creates unique challenges – on a daily basis. It’s not a condition that gets a lot of media attention, and families are constantly seeking practical advice and emotional support to deal with the less obvious consequences, hidden that is until you’re the mom or dad faced with caring for a child suffering from this rare genetic disease.

One such mom, Leslie Rader, recently joined the team at Hollister Wound Care to take on a new professional role, Coordinator of EB Affairs. Her mission? To help all of us – families, patients, medical professionals and companies like ours get to the heart of the matter: what kind of information do EB families need; what resources currently exist and where; and how can additional information, strategies and tools be gathered or created to help EB families manage this condition and maximize use of those resources which are available.

Leslie currently volunteers for the Dystrophic Epidermolysis Bullosa Research Association of America, or DebRA, the primary EB patient advocacy organization for which Hollister Wound Care partners with frequently. During her five years at DebRA, she developed a comprehensive library of practical information, launching several programs along the way including a New Family Advocacy Program which provides support to parents of newborns diagnosed with EB, including information related to wound dressing, insurance coverage, medical supplies and caring for an EB newborn. We’re excited that Leslie is going to be able to bring not only to our company but to this online community that wealth of knowledge she’s accumulated, both as a research professional and as a mom to a child with EB.

According to DebRA, 1 out of every 50,000 live births is affected with some form of EB, regardless of race, gender or ethnicity. It is a universal concern that’s rarely talked about yet one that is changing the lives of families like yours, like Leslie’s and like many others.

Our goal at Hollister Wound Care is to reach out to everyone involved and create an online resource center where young patients and parents can better understand the condition, families can learn from other families and the medical community, and professionals in the EB care field can make themselves available as another knowledge base for EB families to offer coping strategies, care information, tips for using specific supplies or equipment and readily available contact information for specialists and medical goods suppliers.

As we build this online EB resource community, we want you to be an integral part of it. We welcome your input about the kind of information you’d expect to find here. This is as much your forum as it is ours, so, parents, tell us: what resources were the most difficult to locate when you began caring for your child with EB?

EB Resource Website
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