Self Help - Ehlers-Danlos Syndrome & Skin Friendly Products

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Ehlers-Danlos Syndrome & Skin Friendly Products

SRCurry LPT/RN,C

A nurse since 1984 working in a variety of roles, ranging from disaster

response & debriefing, telephone triage to Hospice nursing. Disabled in 1994

by EDS. I attended my first EDNF Conference in 1995. It was in Ohio that I

'hooked-up' with EDS'ers & very soon after a Northern California Branch was

formed. I am the Secretary/Medical Consultant for the NorCal Branch of the

Ehlers-Danlos Nat'l Foundation. I have Hemophilia & the Vascular Type of

EDS.

***This is a representation of the products I have found to be helpful.

PLEASE always consult your physician before adding or changing any part of

your regime. Any SAMPLES are for EDS EDUCATIONAL PURPOSES ONLY Nothing

said, shown, or samples taken are not & should not be construed as a medical

consultation or treatment.

SKIN AND EDS

The EDNF Pamphlet The Skin in Ehlers-Danlos Syndrome

by Sheldon R. Pinnell,M.D.Chief,Division of Dermatology Duke University Med.

Center Durham, North Carolina.

States .the skin is involved in essentially all patients with EDS. That is

not surprising since we have recently learned that collagen, the major

structural substance found in skin, is abnormal in some forms of EDS. The

most common type of skin involvement is very soft skin. This has been

called " skin you love to touch " .

In many patients with EDS, the skin is easily stretched, often loose fitting

& wrinkly, premature sagging & wrinkling. In some patients the skin can be

extremely fragile and splits easily with minimal injury. This is especially

true in young children and for some patients, it can be a continual problem

and cosmetic nightmare. To compound the problem, wound healing is often

abnormal, resulting in widened, thinned, disfiguring scars.

Wound healing can be delayed so that occasionally weeks and even months are

needed for appropriate scar tissue to form. The resultant scars are often

quite thin & of poor quality. In some cases the skin is so fragile that it

is difficult to properly close the wound with stitches to achieve an optimal

cosmetic result. The stretchy nature of skin & poor underlying connective

tissue sometimes causes lacerations to a[pear larger and more serious than

one would ordinarily expect..families should enlist the services of a

Plastic Surgeon who knows about this disorder so that optimal results can be

anticipated.

SUNSCREEN & EDS

Because the skin is already thin in EDS, premature aging of the skin is an

added risk. Since the sun markedly accelerates this process, it is prudent

to protect exposed skin from the sun. Sunscreen should be used daily, but

especially when sun exposure is contemplated.

SPIDER & VARICOSE VEINS

Support Hosiery is recommended at all times to prevent worsening of

varicosity's related to Ehlers-Danlos Syndrome. There are also several cream

products (DERMAL-K)made to decrease the appearance of spider veins.

Artificial suntan products can be used successfully.

Ehlers-Danlos Syndrome Brief Overview

EDS is a genetic defect in the collagen molecule itself. An inherited

connective tissue disorder often characterized by joint hypermobility,

dermal hyperelasticity, widespread tissue fragility, joints are hypermobile

& frequently dislocate. Unlike Lupus, EDS is not an antigen/antibody

problem. EDS is gene mutations effecting the structure or assembly of

different collagen's. The cross-linking of the collagen fibrils is thought

to be defective. There is easy brusibility & bleeding. Ehlers-Danlos

Syndrome may be classified into 6 major types. These Types represent

distinct disorders. EDS can be a painful, debilitating & isolating disease

Affecting(1:5,000-10,000)individuals. Understanding Starts with YOU !!!

EHLERS-DANLOS SYNDROME & SKIN FRIENDLY PRODUCTS LIST

3M PHONE - 800 962-8352

#5634 TEGAPORE

#1583A COBAN WRAP

#90414 & 90412 TEGAGEL

#2956 MEDIPORE

#90022 TEGASORB THIN

#90002 TEGASORB

#90112 TEGAGEN

3M MAGAZINE HAND-OUT GUIDES

#70-2008-3817-8 #70-2008-900-5

#70-2008-9592 #70-2008-8960-1

#70-2008-9849-5 #70-2008-9884-2

#70-2008-3916-8 #70-2008-6377-0

#70-2008-5940-6 #70-2008-9000-5

#70-2008-9895-8 #70-2008-7371-2

JOHNSON & JOHNSON MEDICALINCPHONE#800 423-4018

#MT2440 TIELLE-HYDROPOLYMER DRESSING REMOVAL WITH NORMALSALINE

#2494 FIBRACOL*-COLLAGEN90%-ALGINATE10% DRESSING

#2497 NU-GEL*-THIS GEL IS SUPPORTED BY A FUSIBLE FIBER FABRIC.

#2014 ADAPTIC*-NON-ADHERING DRESSINGS

#2052 RELEASE*-NON-ADHERING DRESSING

PREVACARE*-PREVENTATIVE SKIN CARE PRODUCTS

J & J MAGAZINE HAND-OUT GUIDES

THE SCIENCE OF WOUND HEALING

J & J HAS SEVERAL WOUND CARE HAND-OUTS, IT IS BEST TO CALL SO

YOU GET WHAT YOU NEED. ALL PRODUCTS HAVE AN INFORMATIONAL 'HAND-OUT.

NORTH COAST MEDICAL INC PHONE - 800 821-9319

#NC12872 COTTON STOCKINETTE

#NC44889 FLOTATION ELBOW PAD

#NC79021 3-POINT THUMBSAVER MP

#NC51000 NORTH COAST THERAPUTTY

THERMAL PLASTIC

#NC21020 RHEUMATIC'S PEN

#NC65598 COATED GOOD GRIP TABLESPOON

#NC91311 PT BELT

#NC64725 THERA-BAND THERAPY BALL

#NC35292 DRINK THING

#NC28283 T TURNING HANDLE

#NC92040 HEADMASER NECK COLLAR

NORTHCOAST MEDICAL INC. MAGAZINE HAND-OUT GUIDES

HAND THERAPY98 CATALOG

FUNCTIONAL SOLUTIONS CATALOG

RETURN TO FITNESS

WET FORMULAS INTERNATIONAL PHONE -

WET LITE-LUBRICANT GEL-WITHOUT SPERMICIDE.

WET ORIG.-LUBRICANT GEL-WITH SPERMICIDE

Dixie Health Inc.PHONE - 800 288-9232

DERMAL VITAMIN K - Promotes epithelial growth. Applied twice a day on

bruises, broken capillaries, scars & even hemorrhoids. Promotes normal

healing of damaged skin. Can be used 2 weeks preoperatively followed by 2

weeks post-op to decrease bleeding & bruising. Reduces scarring even

pre-existing keloids.

Glenwood PHONE -

SurgiGrip Tubular Elastic Bandage &

Applicator=A convenient alternative to flat wrap bandages & Latex free

Protective Products=Elbow/Heel/Arm & Leg protectors.

3M COBAN WRAP - Non-adhesive elastic wrap. Highly adaptable to most all

areas of the body. Avoids skin tears or the need for/use of adhesive tape.

TELFA- A non-adhesive pad. Comes in many sizes.

J & J ADAPTIC - Non-adhering petroleum base mesh dressing.

STERI STRIPS - Used instead of sutures (when able). Avoids further skin

tearing or damage.

TINCTURE of BENZOIN- Used to keep 'steri-strips' in place. Creates a

'sticky' surface. CAN NOT BE USED IF ALLERGIC TO IODINE.

No.Cost Med.THERMAL PLASTIC - Used in custom fabricated splints, braces &

adaptive equipment. Comes in many different colors, with instructions & can

be padded.

VITAMIST - This is a spray vitamin product used for those of us that have

swallowing problems. (Comes in children's form.)

TEGADERM/OPSITE/BIO-OCCLUSIVE DRESSINGS-

A " Second Skin " . These can be helpful but they should never be taken off

without first bracing the skin around it OR preferably waiting until it

removes itself. Water can be applied to the top to induce loosening of the

adhesive. 'Use With Great Caution' especially Type I or skin tears easily.

ASSISTIVE DEVICES

ASO-Ankle Supports-These splints are much better (than AIRCAST) as they are

made for long term use.

AFO- Ankle foot orthodic

AFOK-Ankle foot & Knees

FROG LEGS & BULL FROGS PHONE -

-Suspension casters (shock absorbers) for Wheelchairs. No more

shoulder/neck/pelvis dislocations from a 1/4inch curb!

SIRIS SPLINTS- A three-point splint used to reduce hypermobility in finger

joints. Also MURPHY SPLINT & Spiraled THERMAL PLASTIC splints & the

SILVER RING CO has representatives here.

LARGE INFLATED BALL - Help improve balance, reflexes, & strength. Just

sitting on the ball contracts muscles throughout your body. Promotes

strength gain in a minimal amount of time. Used to reduce dislocated joints

(very helpful with SI joint reduction). Appropriate for all fitness levels.

NEUROMUSCULAR ELECTRICAL STIMULATOR - Used to maintain a range of motion,

reduces subluxations/dislocation, retard disuse atrophy relaxes spastic

muscles, muscle re-education & stimulating the contraction of specific

muscles or muscle groups.Not a TENS!