Emily’s Vitiligo- part 14
Don’t Give Up on Healing Vitiligo
While working a large puzzle it is important to step back at times, take a break and rest. Always look back at the cover for the big picture. It helped in this vitiligo puzzle to keep a record of what happened on the journey, through notes, photos, and medical records. One thing that helped was that anything we posted to VSIG was saved into an archive. So it was easy to go back and find out when we started any new course of treatment.
You will find the treatment that is right for you. With a little perseverance you will get rid of vitiligo.
We watched Lorenzo’s Oil a couple of times. If anyone needs inspiration in the fight against any disease, rent this movie. It also shows you that things could be worse. Another good inspirational movie was Patch Adams, it helps you to think outside of the envelope.
Also the support we receive from VSIG has been fantastic. Reading about what others are doing and their success is very inspirational.
This disease could drive you crazy, if you let it. At one point Emily was gaining and loosing pigment at the same rate. The timeline will be helpful in this regard, in it I talk a little about how she was depigmenting and repigmenting. There was a transition period between depigmenting and repigmenting. I seem to remember that she was depigmenting for a few years, then she was depigmenting and repigmenting for some period (but the depigmentation was winning), then she stopped depigmenting altogether.
I have noticed that since Emily’s vitiligo is no longer “active” (read – actively spreading) her scars heal and pigment normally.
We have noticed that when Emily’s spots turn red that seems to be a good sign. They start freckling after that.
With vitiligo, persistence pays off. I have noticed that with anything that requires persistence it helps me to read different authors on the subject. Their words will inspire you to keep the fires burning.
Emily has made very good progress. Here is a timeline of her progress with before and after photos. We recommend taking pictures of the vitiligo often. I suggest using artificial light, write down information like the film speed, pay attention to body position and facial expression and watts of light used. Keep the background the same, a solid color works best. Without pictures it is hard to get feedback as to whether the repigmentation is progressing. Keeping other records helps as well, start a scrapbook. It is all great feedback, how else will you know what works for you? The timeline really helps when you find yourself slipping and going back to old habits. Sometimes we forget how far along the vitiligo had gotten on Emily. When we see the pictures we get renewed energy to stick with what works.
Following the timeline is a side by side comparison of the photos (before and after).
- We moved to our current home, on Jamaica Dr., 2-92.
- Emily’s 5th birthday, 7-13-93.
- Subscribed to Alternative’s, from Mountain Home Publishing, I was looking for ways to lower my cholesterol, 2-10-94.
- First spot, on foot, 3-94.
- Ordered back issues of Alternative’s, 4-7-94.
- Joined the local food coop, Sunseed 4-11-94.
- Started adding more yogurts with Acidophilus to our diet.
- Local dermatologist (Dr. Eells) diagnosed Emily with vitiligo; she had a spot on her right ankle and one on her left thigh, 7-7-94.
- Ordered back issues of Alternative’s (issue dealt with Melagenina, 3-93 Vol. 4 #21), 7-8-94.
- Emily turns 6, 7-13-94
- Joined NVFI, 11-4-94.
- Ate vegetarian for two months, Jan + Feb. 1995.
- Pediatrician Acosta, diagnosed as vitiligo, requested second opinion from dermatologist 4-6-95.
- Blood test, high cholesterol, 125 LDL, 184 total (this may indicate that her homocysteine levels were high. In that case folic acid and other B vitamins would be helpful. In future homocysteine levels should be checked), 4-6-95.
- Wrote letter to NVFI about starting a listserv, 4-27-95.
- Ordered back issues of Alternative’s, 4-30-95.
- Reading about PABA and B vitamins for vitiligo on the Internet, before hearing of Dr. Montes, 5-1-95.
- Susie graduated from UCF, Big party, had gone back to eating meat again, 5-3-95.
- Started giving Emily PABA, 5-9-95.
- Received AAD guidelines from Dr. Eells, not much use, 5-22-95.
- Noticed that it started in places where she sweats, 5-23-95.
- Had it on face, armpits, ankles, knees, and neck 5-24-95.
- Dermatologist Moreno, diagnosed Emily with vitiligo, he was surprised at how far along it had progressed for her age. He wanted to start PUVA immediately and he referred her to Dr. Zies. We decided against PUVA after reading Physicians’ Desk Reference, his report indicated it was on her neck, arms, legs and trunk. At this point we were really questioning our own judgment, 5-24-95.
- Been reading VEGAN-L and HERB listservs, 5-26-95.
- Received Dr. Montes’ article on vitamin therapy from the NVFI. I wrote letter to Dr. Montes and Dr. Rebat Hadler, 5-30-95.
- Started vegetarian lifestyle, also started folic acid and vitamin C treatment (probably stopped the PABA at this time), Susie took vegetarian cooking class, 6-1-95.
- From a note on my to-do list, “Dr. Acosta mentioned that he will get a med-line search. Should take a couple of days. Would like time to digest information. Seemed very receptive. Would like any information I get from Dr. Nordlund. A little skeptical about Buenos Aires research.”, 6-1-95.
- Took my letter to Dr. Montes to the post office, 6-1-95
- Reading more about herbs and psoralen, 6-95
- From a note on my to-do list, “Saturday 6-10-95 3:50 PM Emily by herself on couch, sucking thumb, Kyle + Katie outside playing. Emily has headache. Just recently ate a banana, not hungry. Gave her a half a kelp pill. 15 minutes later she is outside playing and happy. 2 B-50, 500 mg C, 1/2 kelp, 1 Amino Acid complex, Multi-vitamin, Cal Mag Zinc x2, and primrose oil. I don’t believe Immune system is to “strong or weak”. I do believe it could use supplementation to properly carry out its function. (Note: Strong and weak sound like jargon words when describing the immune system. We should use more descriptive language to describe what is actually going on.), 6-10-95
- Note on my to-do list, “folacin deficiency, produces anemia. Antibiotics particularly sulfa drugs are chemically similar to PABA. Blocks production of folacin. Page 294 Introduction to Organic and Biological Chemistry, Ronald M Scott, 6-12-95
- Plotting her morning temperature, turned out to be borderline low, started kelp tablets, 6-12-95.
- We received mail from Dr. Montes, 6-13-95.
- Wrote to Dr. Urbanek about coal tar therapy, Dr. R. W. Urbanek 1324 Victory Blvd. Staten Island, NY 10301. My father-in-law mentioned a possible cancer link with coal tar and I didn’t look into it any further, June, 1995.
- Dr. Bob Zenhausern agrees to host VSIG at St. John’s University, 6-15-95. YES!
- Birth of VSIG, 6-23-95.
- Finished reading May All Be Fed, 6-27-95.
- Started Juicing, after talking to Mark Vigeant, 6-28-95.
- Emily turns 7, 7-13-95.
- Had read May All Be Fed, told Ludger Solbach we were eating all whole foods, 7-14-95.
- Stopped vitamin supplements for blood test, 7-20-95.
- Started Vegan (pure vegetarian) lifestyle, 8-95.
- Switched to acidophilus supplements.
- Started drinking Distilled Water, 8-9-95
- Looking into esteem building activities for Emily (sports related). I think that at this point we felt she might never repigment and we should prepare her for a potentially difficult teenage life. I remember looking into Tai Quon Do but the kids weren’t interested, 8-12-95.
- Joined EarthSave, 8-23-95.
- Spots have spread to her legs, arms, chest, back, neck and chin, 9-20-95.
- Checked vitamin levels in blood, all normal, didn’t go back to using the vitamin supplements (used occasional multi-vitamins) 10-3-95.
- St. John’s Wort, started taking 1 per week (not sure when we increased it to three per week) 10-4-95.
- Her vitiligo seems to be continually changing, freckles on a white spot, more defined border on another spot, then a new spot somewhere else, 10-20-95.
- Attended Orlando Health Fair, 10-95.
- Vitiligo still active, some spots freckling, others depigmenting, 11-5-95.
- Article in “Let’s Live” about vitiligo, PABA, b-vitamins and hydrochloric acid, 2-96.
- Became lifetime members, Sunseed Food Coop 3-5-96.
- Sandy Konkel offered Mind/Body Counseling, 3-10-96.
- First session with Sandy, Mind/Body Counseling, 6-6-96.
- Started taking Super Blue Green Algae, 6-10-96.
- Mind/Body Counseling, 6-20-96.
- Started noticing more freckling, 6-22-96.
- Started taking one Catalase per day, 6-25-96.
- Emily turns 8, 7-13-96.
- Photo on Aunt Sandy’s rocking chair, cropped to seek neck, knee and shin, 7-23-96.
- Worked the EarthSave Booth at the Orlando Health Fair, 10-30-96.
- Mind/Body Counseling, 12-4-96.
- Started feeling more confident about her progress, scratched vitiligo off of to-do list, 1-97.