BRUCE AND EPIDERMOLYSIS BULLOSA

Apligraf

My left ankle photo #1 Before:June 15, 2000 photo #2 w/Apligraf: August 2000 photo #3 Healed: October 2000

I didn't know about Apligraf until I was in the hospital awhile for cancer to be removed from my right ankle. I first heard of Apligraf when it hit national & local news, and along with local story in newspapers when little baby Tori was born.

I thought someday I would like to try this Apligraf, then I had some sores develop on my left ankle & right heel. The left ankle had showed up about Sept. of 1999, and right heel back on March of 2000. Well, I had talked to Lorraine Cameron around March or April about it, and at that point she got in contact with her representative in her area to ask her to locate a representative in my area. Sure enough, Lisa Dunn, Norvartis Representative called me and got things going. I have heard some positive results, as well as not positive results. I knew that every EBer is different, and of the chances of it working or not.

I had three bad areas, but could only pick the two worse ulcers. So I picked the left ankle (been there the longest), and right heel (it was bad because it was right on the edge of my heel). I liked the procedure because it was outpatient, didn't have to use my own skin, and just hurt a bit, but nothing compared to have hand surgeries or having skin cancer removed from a couple of years ago, that was the roughest time of my life.

The key to making Apligraf work, is the procedure before getting Apligraf on my ulcer. First they numbed the area, then the debredment went real good, then use eyeitdine to clean if off and sterilize the area. But the itidine had to be cleaned off completely, nothing left of it, or it will kill the Apligraf. Then they laid the Apligraf on my skin, cut part of it for each of my two ulcer, then spread carefully over the ulcer, then they sewed the Apligraf or use stitches to sew the Apligraf to my skin to give the Apligraf a better chance to work.

My right heel photo #1 Before:June 15, 2000 photo #2 w/Apligraf: June 22, 2000 photo #3 Healed: October 2000

The doctors used Xeroform as a dressing on top of the ulcer / Apligraf, then laid Telfa on top, then 4x4 padding, then wrapped it carefully. They left it wrapped for 3-4 days, then you could see the healing process already starting within a few days.

It was for me a miracle, because less break down in these area, plus it prevented these areas from getting worse, and the big possibility was have them turn into cancer. Apligraf can heal an area from 8-16 weeks, bandage would have to be changed at least twice a week for several weeks until they felt comfort to go once a week, then when it came time for me to change them, but only at the end of the healing process.

The left ankle healed in 16 weeks, and right heal took about 6-8 weeks. Doctors were concerned with the right heel, because it was on the edge, and pressure of standing, and walking on it. But they boosted and padded it well for me, and to their surprise it healed. They thought that the right heel would have taken longer, and more difficult to heal.

So far today, no blistering, and no break down. The areas feel a lot better today than they were when it was frustrating to see these areas not heal. I have had to wear no shoes, and wear house slippers, and wrap & pad my feet well, until I get my other foot ulcer healed with Apligraf that I'm current doing now, then I'll go for getting shoes made for me to help support my feet from breaking down in the future.

Apligraf it's not a total cure, but relief to the healing ulcer that no longer heal due to having RDEB. I'm been very pleased with it so far. If I knew I was at risk with a sore on my right ankle that wasn't healing, and caught it early, I would have had the Apligraf done, but that was too late due to having that sore 18 months then finding out I had SCC in that area. But that before I knew and had support like I know now. I currently have one now healing, and will have more pictures of this later, and a story to tell about it, because my plastic surgeon had some things to say about Apligraft that he doesn't support.

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