EB Medical Directory

Important EB Related Phone Numbers 

 Debra's EB Nurse Educator Program

Phone (toll-free): 866-DEBRA-RN (866-332-7276)
Email: nurse@debra.org

Wound Care Supplier AdaptHealth (Formally known as National Rehab and McKesson)
855-5EB-LINE
8a-5p (EST)


Cincinnati Children’s Hospital Medical Center, Cincinnati, OH
Contact Donna Engells
Clinic Coordinator (513) 636-2009
http://www.cincinnatichildrens.org/health/e/epidermolysis-bullosa/

Stanford School of Medicine, Palo Alto, CA
Contact Loraine Spaulding
Clinic Coordinator (650) 804-4820
http://dermatology.stanford.edu/gsdc/eb_clinic/

The Hospital for Sick Children
Toronto, Canada
(416) 813-1500- ask for the EB Clinic

University of Massachusetts
UMMHC, Hahnemann Campus
281 Lincoln Street
Worcester, MA 01605
Phone: 508-334-5979 - ask for EB Clinic

Herbert Irving Center for Dermatology and Skin Cancer
 Herbert Irving Pavilion, 12th Floor
161 Fort Washington Avenue, New York, NY 

Columbia University Dermatology Associates
16 East 60th Street, Suite 300
New York, NY 10022
To make an appointment at either location call 212-305-5293.

Phoenix Children’s Hospital
1919 E. Thomas Road, Phoenix, AZ 85016
(602) 933-2053

The Children’s Hospital Aurora
13123 East 16th Avenue
Aurora, CO 80045
720-777-8445

Sydney Children's Hospital
 Sydney, Australia
Contact # 9382-1470 (not sure what the area or country code is)

There are other clinic locations.  To find one near you contact DebRA.org

 

©Garrett's House 2021

Heal EB - Cause The Wave

Pain Management Recomendations in EB

A new article was published yesterday on pain management in EB:

Pain care for patients with epidermolysis bullosa: best care practice guidelines

 

 

 

 

©Garrett's House 2021

Cause The Wave: Eddie Vedder and the EB Research Partnership

JGSF and Heal EB annouce Merger

Jackson Gabriel Silver Foundation and Heal EB Announce Merger

 

 

  

 

 

©Garrett's House 2021

EB on TV!

Butterfly Children - New York News

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

©Garrett's House 2021

RIP Hugo

The following is what I posted on Facebook on Sunday:

Most of you don't know that Joey shares a birthday with a little boy named Hugo who was also born with EB on the other side of the world in Sweden. They will always be birthday buddies Hugo was born with a more severe form of EB though, Junctional-Hertliz:( But despite what a piece of paper said, he beats the odds day in and day out surprising his family and his doctors. His family rejoiced each and every day never knowing when it would be his last. His mom, Hanna and I spoke many times thru Facebook over the past 3 years. I was so happy to see Hugo doing so well. Then tonight I got on my computer remembering I need to translate something him mom posted earlier today but I couldn't translate it on my phone. I never imagined i would be reading that after 3 years, 2 months and 3 days, Hugo's little heart could take no more and he is now flying thru Haven with perfect skin and angel wings. My heart just breaks for Hanna and their entire family. 3 years maybe more than they thought they'd get, but 3 years wasn't nearly long enough 


Today there was an article published in a Swedish newspaper about Hugo.  Here is the original link to the article:


Hugo 

Here is the translated version via Goggle Translate.   

Hugo was fighting for life - now he has fallen asleep

Hugo was struggling for life.

Against all odds, he was stabbed with a small bandaged hands against the incurable skin disease.

This weekend, he fell asleep, 3 years old.

- I hope that he plays with other kids up there now, says mother Hanna Johansson.

They did share three happy birthdays and at least three million kisses. But now, three years of intensive care, love and sorrow over , without warning.- It went very calmly . Hugo died at home in his bed , in his sleep. We did not know it would happen but the heart could not beat anymore, says mother Hanna Johansson.It was she who got the last wakeful night with Hugo.- I have not understood it yet. The father and I are separated , so it feels like Hugo is with dad and soon home again.The last time , especially last week , the boy felt better than ever.- He did not even trouble breathing. On Saturday , he went for the first time myself to the store, but to sit in the stroller. And in the evening he ran and played with his brothers until the clock 22.Was diagnosed after two monthsThe following day , the mother the most difficult words on Instagram , for all that followed Hugo's destiny and supported the family:" At 5:10 this morning dropped off our beloved son back . Much too early , missing is endless. To get to know you is the nicest thing happened to me. , I love you Hugo, today , tomorrow and forever."Hugo Törnqvist was born 8 March 2011. Two months later transformed baby happiness to sadness when the boy was diagnosed with EB, Junctional Epidermolysis Bullosa Herlitz , a rare genetic disorder that causes the skin to form slow-healing blisters and loose.The doctors gave him no more than eight months. But two years later, mom Hanna on his blog celebrate his son's fighting spirit :"It's not bandages and gloves Hugo is wearing . It's sweatband and boxing gloves , because we 're gonna beat the shit out of this disease ! ""Hugo himself who has fought "When Aftonbladet 2013 visiting family outside Karlskrona Hugo would soon fill two years. Faced with the photographer he rolled proud meatball after meatball in mud with their little fingers.His joy was like any other two-year- insertion , but the parents planned only for two days at a time .The boy was in constant pain and a probe with nutrient solution via a button on his stomach because his throat has become crowded of scarring .If he screamed with joy he risked airway emergency slammed . Therefore, had the home open floor plan with no thresholds to avoid new sores . Children's room was also embedded and the floor covered with a soft gymnastics mat. But pennants in the roof and the little balcony that dad Magnus snickrat for Hugo to be able to look out the window made ​​up for the joy of play .- In particular, Hugo himself who has struggled . He never ever complained. I have never met a happier person , says the mother.But the struggle intensified , with emergency trips to the hospital , contrary to the Social Insurance of the right to assistance care - and an increasingly bloody little body .The hope for a bone marrow transplant burst when Hugo hit by a virus that left him temporarily blind. And when the parents rejoiced that sårblåsornas number had gone down , he suffered rather severe breathing problems." He has taught me that there are no bad days "Yet life went on . Hugo learned to talk. His first words became a mother , soap bubbles and milk. And the last time he got help with the pedagogy of two assistants who replaced the nursery which he could never begin.- Hugo has taught me that there are no bad days. If you have a problem that can not be resolved you wait till the next day . You never give up.In parallel with all the routine chores , the big question still hanging over the family: How old was Hugo get rid ?- We are very grateful that he did not suffer in the end. He had to go away as we would rather , if one had to choose . But his brothers , 7 and 8 years, is very sad and want little brother back .Hanna Johansson is also grateful for the years all contact with other sufferers as she was able to share advice with .- Hugo's life has been a struggle , but also the best three years of my life . It is a privilege to have been part of Hugo's parents.   

Rest in Peace Hannah

Monday even Heaven gained a new Angel.  11 year old Hannah York traded her bandages for angel wings.  She was just 11 years old.  She has RDEB and was the 5th patient to take part in the Bone Marrow Transplant trials for EB a few years ago.   I had followed her journey thru that process and was so sad to hear the news Monday night.

You can read here blog here:  A Cure for Hannah

You can also watch the BEAUTIFUL slideshow done by a friend of her family here!!

Rest in peace Hannah, you fought a brave battle.  You will NOT be forgotten.

Epidermolysis Bullosa Simplex Registry

For those affected by EB Simplex, please check out the Epidermolysis Bullosa Simplex Registry

 

 

 

 

 

 

 

 

 

 

©Garrett's House 2021

My ankle wound

I developed a wound on my ankle last May that started off the size of a dime, or about 1.5cm x 1.5cm.

It was very deep and not a typical EB wound.  It turned out to be a venous ulcer.  I had a lot of biofilm and bacteria on it that no only prevented it from healing, it was causing it to get bigger.  By Thanksgiving I had three ulcers that were rapidly becoming one. 

Despite being on oral antibiotics for months, doing bleach and vinegar soaks the infection continued to worsen.  I tried every wound care product out there; it would not heal.  I discovered in the process I am allergic to silver, Medihoney, Hibiclens and a new product called Endoform:(  the Endoform was pretty much my last hope. 


By Christmas the wound was 6cm x 4+cm:-(  very infected and very, very painful:(

So I stopped the antibiotics, soaks, specialty ointments and dressings. 

I made up a homemade ointment from a recipe I got from another EB parent

one 14 oz tub of Aquaphor

60cc's  of melted coconut oil, 

7 grams a powder called lactoferrin

7 grams of FINELY ground Xylitol, 

30cc's of tea tree oil. 

30 DROPS of lavender oil   

I mix all together in a empty container.  The Aquaphor is the base, the Lactoferrin and Xylitol are essentially for removing biofilm. And the oils reduce inflammation and help treat infections. 

I also make a mixture of 30cc coconut oil, 10cc tea tree oil and 5 DROPS lavender oil.

I wash the wound with plain soap and water.  Apply the oil mixture to the skin around the wound.  I then apply anti fungal ointment to the edges of the wound.  I then apply the home made ointment to mepilex transfer, cover with mepilex lite or restore lite foam and then secure with tubifast.  I tried the thicker dressing, the drainage still soaked thru and they didn't allow the wound to breathe and caused more itching.

This kind of ulcer drains A LOT and the drainage is toxic and painful.  I have to change the dressing as soon as I see drainage on the outside of the dressing.  Which for me is 5-6 times a day at least.  I know that is not practical for most with EB but it is working for me.

I have also changed my diet.  I now drink a protein shake daily.  I also reduced my sugar intake and eliminated caffeine and alcohol.  Those three things were causing significant inflammation to my wound.  

So between the changes in wound care and diet, my wound went from 6cm x 4cm to 4cm x 2.5cm within a month!!!   I still have a long ways to go before it is totally healed but this is a huge difference.  

I will post pictures at the bottom for anyone interested but warning they are graphic! 

I am not looking for any advice this time:-) I am posting this in the hope it might help others and to update those who have been wondering how my wound is doing.  






















PICTURES for those interested!!  WARNING they are GRAPHIC!!

original wound (May 2013)

 July 2013

August 2013

 Thanksgiving 2013

Early December 2013

 

Christmas 2013

January 2014

February 2014

©Garrett's House 2021