Missionary encounters extremely bizarre skin condition in Eastern Europe (part 2)

About a month ago on this blog, I posted photos and a story about a missionary in Eastern Europe who is caring for a man who has keratin-like matter growing out of the skin on hands and feet (see part one of the story here). A month later, I can report that man's strange condition is improving - but what is causing the condition has yet to be exactly identified, it seems. The man is also getting the full attention of the medical and research communities in the region (rather mysteriously, as you'll see below). As you can see from the recent photos the missionary sent me, the growths have been reduced through chemical treatments, soakings, and whittling down (a dremel saw was used). While the research and treatments are still being conducted, the man and his family seem to be in for the long haul (click 'continue' below for more photos). The missionary told me...

"I have looked at the blog link, and I found some of the responses very helpful. I passed it onto the Romanian people in charge of the man. I will try to flesh this out a bit more for you. The man is on the eastern side of Romania, and I am on the western side, though the country is not so big (about the size of Oregon) it takes 16 hrs to get from here to there. There are no interstates, and every time you come to a new town or village you slow down to 25 miles per hour. I went by train to avoid the wintery road conditions. I saw him on a Monday, and worked on him for 2 hours cutting and cleaning and applying Compound W-type acid in areas. Approximately 90% of the growths do not have blood circulation or pain associated with cutting them. About 10% do bleed slightly and seem to hurt. After 2 hours he became very fidgety and I decided to stop. After 2 hours of work there was not much to show for it by way of a noticeable difference, though there were a lot of growths cut off. I would have needed to work on him a month or more at the rate we were going. I returned home on Tuesday having treated several areas with the acid to see what would happen with them, and I wrapped one foot with a Una boot, to see if that helped (some one on the blog suggested that). My Romanian contact there was going to return in a week and check on things. When he returned the next week, he found the man was gone. His mother said that on the previous Friday, an ambulance had come to their home (they live in a rural area) and said they had come for him. They loaded him up and took him away. Neither he nor his family had called for an ambulance. He was gone about a month. He is back home now (he returned home just before Easter). He was in a hospital in Bucharest where they mainly did tests, as far as he knew they did not diagnose anything. The medical system here is not very forthcoming with information in general, not just in this case. He thinks that he will be going back in May. They did cut many more of the growths off his hands and they look much better. They did nothing to his feet. I think it is a great improvement. I think what you did on the web sight was very good and helpful, I was impressed. I will send you my newest pictures."

"As far as sending money, I left money with my contact there. So far, none of it has been spent. I would be concerned about giving him or his family money directly. I don't think that would be a good idea. If money was needed for the medical treatment, I could see that it reached the right hands, but at this time there does not seem to be a need for additional money for them. It does not appear that any of the anti viral drugs mentioned [in the blog post's comments] have been used and do not appear to be readily available here, I would like to have them and be able to offer them to the doctors treating him, but currently do not have a source for that. If someone was able to get them in the US, I could give you an address in the US [email me for address and info] to send them to, and the next person that I knew of would be coming to Romania could hand carry them to us here. The Romanian postal system is very unreliable, so I would not trust it with the meds. If someone wanted to donate for medical needs (in Romania) we would happily administer the funds, but at this time there does not seem to be a need for additional money for Ioan. Please feel free to write and ask more questions if you have any or ask for updates in the future."

When I first posted this story, I kept names, faces and even locations out of it as requested. Although now it appears now that the man's plight has made a few Romanian news outlets. You can see those stories (with some great additional photos) here, here and here (a very rough Romanian text translation program can be found here - if anyone else can provide an exact translation, please do). The man is under the primary care of Dr. Carmen Madeleine Curea, the primary dermatologist at Spitalului Clinic Colentina (in Bucharest), as well as some other specialists. Although they aren't saying much about what they have discovered, or even if his condition is precedented at all, at the very least he appears to be being cared for, and his condition is being kept under control.

(click each photo for larger view)

Comments

[verizonman]

poor guy. don't make fun of him.

[Historianita]

Good news! Judging from this video clip from Romanian TV, Ion Toader has undergone plastic surgery on his right hand. His left hand looks much more normal and the keratin growths look bleached and more pororous.
If anyone understands Romanian and can post details of his treatment, that would be very interesting. It looks like from his leg was grafted to his right palm, but I'm curious about how the doctors eventually debulked all those dense growths.
http://www.acasatv.ro/noutati-acasa/emisiuni/la-povestiri-adevarate-dupa-26-de-ani-omul-pasare-si-a-vazut-mana.html

[Carrot]

Thanks for the video. I suspect they removed as much of the growths as possible via cutting and chemicals, then probably burnt his skin away (hence the graft).

[Eric]

This news has made my day. The surgeon did a great job on his right hand and almost all the growths are gone from his arms.

The left hand is interesting. The dyplasia on the left hand is much less solid that it was only a few weeks ago. I suspect they are using drugs like interferons and acitretin on this hand. Maybe a clinical comparision? As in which is the better treatment, surgery on the left hand or interferons on the right?

I also liked the way the surgeon showed obvious affection for the man when he rubbed his head.

[Historianita]

I hope this case is written up soon in an English language medical journal so I can understand more about it--not just the treatment & surgery but the circumstances of Toader's life and his struggle get help. It looks like the Romanian public is helping him financially; some news stories have info on how to donate money. Eric, you're correct about Ion's left hand being interesting; it looks so small now! It reminds me of bleached coral. Most of the Romanian news accounts refer to Ion Toader as "omul pasare"--bird man. Because the keratin growths look sort of looked like feathers? Because his hands lookrf like talons? I dunno. I hope readers with access to medical journals will keep us posted.

[Hope]

Another video clip from June 5:
http://www.acasatv.ro/noutati-acasa/emisiuni/la-povestiri-adevarate-omul-pasare-barbatul-cu-mainile-acoperite.html?page_no=1

[Eric]

More news on Ion. He's back with his family for the summer. From what I could make out he's due to return to Bucharest in September for a further round of operations. There's only a brief glimpse of the Dyaplasia on his left hand, its gone from the 'bleached coral look' that Historiantia mentioned to a more flesh coloured red texture. I think it might be the start of the tranisition from dyaplasia to more normal skin texture. I suspect that Ion having access to interferons, both topical and oral, will be crucial in surpressing any HPV activity in the years ahead.

He's being followed by a film crew and from other Romanian reports that I've attempted to read a film and/or telethone about Ion is being made. On a final point, even though his family and friends are dirt poor, their inherent decency shines through. TV link below.

http://www.acasatv.ro/noutati-acasa/emisiuni/la-povestiri-adevarate-omul-pasar-s-a-intors-acasa-cu-o-mana-noua.html

[Historianita]

Wow! Thanks for posting this, Eric. The changes in Ion's hands are quite dramatic; I hope his feet are improving too. That reddish-black skin on his hands looks painful, but Ion seems happy so maybe it doesn't hurt much. I hope that Dede, the man in Sumatra who also has epidermodysplasia verruciformis, is getting an equal amount of help.

[Petrica Patilea]

MIRACOL! Just have a look at the pictures!! When I'll have enough time, I'll have the man English story. I am the Romanian journalist who discovered Ion Toader in januarie 2007 in his village, disappointed...I wrote about him, I looked for doctors, I brought him to Bucharest, had a public campain for contributions for he is a poor man, he could not even afford to travel to hospitals...
Anyway, he is much, much better now. He had been operated by prof dr Ioan Lascar and everything is going unexpectedly right!

[Eric]

Great work Petrica! What you did for this man was a great human kindness!

I read on your blog that the Discovery Channel will be running a documentary on Ion in November, I'm looking forward to that. I am worried about one thing, Ion's condition arises because his resistance to the wart virus is very low. He will probably need acccess to interferons (they promote the immune response that surpresses the warts) for the rest of his life. Interferons are quiet expensive, so I suggest a fund be established to provide for future care.

In January of this year, the month that you first came across him, Ion became a citizen of the EU. This is very important. There are cross-border medicial schemes available for EU citizens. If Ion's family or the Romanian state are unable to afford the drugs needed to treat Ion he may qualify for treatment in another EU state, or the drugs may be provided free or at greatly reduced cost. Ion as an EU citizen is entitled to a European Health Insurance Card (EHIC).

The European Union also have a special section that deals with rare diseases, They have trans-national co-operation and treatment programmes for people like Ion.

I cannot stress this enough! This scheme may be the mechanism for providing Ion with care and access to advanced medicine for the rest of his life.

Here is the EU portal for rare disease treatment http://ec.europa.eu/health/ph_threats/non_com/rare_diseases_en.htm

Ion is represented by an MEP at the European Parliament. perhaps they can highlight Ion's plight and get him involved in the scheme.

Again great work Petrica.

[Ryan]

tey should just cut them off and give him prostetic robotic hands.

[petrica]

For Ryan: cutting this man's hands and feet would have been the simplest way to get rid of this terrible disease. But Ion refused it from he very begining...
Thank you very much, Eric. I'll take into account your suggestions, depending on his health's evolution... And I repeat, in a few day I hope I'll have his whole story (the true one) in English.

[Danielle]

I am a nurse in Houston TX. I have had two patient's with this unknown disorder. Both had this on their legs. It was treated with an acidic cream. It is almost like alligator skin. To this day, they had no name for it.

[Jeni]

I am so relieved that this maan has finally had some relief, but feel that someone, somewhere should now take up the far worse case of Dede, who's picture and story was publicised in the Chat magazine on 7 June 2007, and seems in a far worse state. Also his family cannot even afford scented oil to mask the overpowering smell coming from his growths.He is only 37 yrs., and is married with children, but this was before the disease took over his life. His elderly parents are left to care for him, as his wife left because the condition was too frightening for the chidren. He is from Indonesia, but "Jeppie" May 17th says she saw an article which said he is from Sumatra. I am sure many people want to help this man but , although I have written and e-mailed Chat for more details, they have not replied to date. Does anyone else know anything more about Dede?

[Sela]

I agree, Jeni. Apparently he was also in Bizarre magazine. Maybe you could try calling both of them (are you in England?) I was thinking we could try and bring the case to the attention of an NGO (non governmental organization) that may be doing work in his region.

P.S. Sumatra is part of Indonesia.

[historianita]

The Romanian news articles that mention the upcoming Discovery documentary also mention Indonesia. Because I really don't read Romanian and the internet translation engines are crap, I can't tell if Dede will be included in the documentary about Ion Toader. Maybe you could email the Romanian journalist Petrica Patilea and ask her, or email the freelancers she interviewed in her blog. If the Discovery documentary features both Ion & Dede, then Dede is probably getting help too.

[historianita]

On August 2 Romanian journalist Petrica Patilea posted an English-language story about Ion Toader on her blog. (She refers to him as Bird Man.)It sounds like Ion was lucky to have a person with her tenacity fighting to get him care.

http://petricapatilea.directnews.ro/bird-man/

[Sela]

Petrica, Historionita -- I am looking for Petrica's email address. When I try to post a comment on her blog, it says I need to be "logged in" but there is no way to log in. What Petrica did was fantastic. I remain concerned that I see nothing about interferons in relation to Ion's treatment, and that seems to be the recommendation of many, How can we transmit this information to those who are caring for him in a respectful way?

[Sela]

http://www.informaworld.com/smpp/content~content=a749256794~db=all

And here's a story of someone with a somewhat similar disease which was treated with a combination of Interferons and Imiquimod, which was recommended on the Revolution Health site by the past president of the Amer. Acad. of Derm...:

http://www.revolutionhealth.com/blogs/valjonesmd/rare-skin-disorder-ma-2928

This photograph is certainly a nasty example of this condition, which is unusual. Although it was known in the past as epidermodysplasia verruciformis of Lewandowsky and Lutz, the condition is now known simply as epidermodysplasia verruciformis. It appears to be an inherited defect in the ability to develop an immune response to the wart virus. Onset is most often in childhood, and the earliest lesions look like flat warts or even like tinea versicolor. They are caused by the same HPV types as we see in the general population. About 50% of cases are clearly inherited; the other 50% may be due to new mutations. There are at least two different genes that are associated with autosomal recessive EV, but there is also some evidence for ane X-linked inheritance pattern in some cases. Unfortunately, when these warts are treated, they almost always recur, and eventually some go on to develop squamous cell carcinomas as well. This is a nasty disease. Personally, if I were ever to run into a patient with this condition, I would certainly investigate the possibility of imiquimod as therapy.

[historianita]

The website for Petrica's newspaper lists her address as petrica [at] viata-libera.ro.
She has posted on this board so she has probably seen the advice about interferons and I'm sure Ion's current plastic surgeon knows about the drugs. The link on Revolution Health was posted here earlier and refers specifically to Ion's case.

[Scottie]

Ion has Human Papilloma Virus Type 2

[SCOTTIE]

The "tree man" from Indonesia also has Human Papilloma Virus type-2

[Eric]

There's an update in English on Petrica's blog. It gives the history of Ion's condition and has an interview in English with Ion's doctor. I don't want to go into too much detail because Petrica said she will post an update here. However, it looks like Ion will have five more operations over the next year and a half.

According to the doctor, they can fix his toes, but they can't do anything for the soles of his feet. That's probably true from a plastic surgery point of view. It's planter skin and that's very difficult to replace with a graft.

I'm not one to second guess the doctor-but if surgery is impossible on his feet, they should at least explore the possibility of using oral acitretin, subcutaneously administered interferons and possibly, topical imiquimod.

I was reading an abstract where a man had epidermodysplasia verruciformis and plantar hyperkeratosis (which is exactly what Ion has on the soles of his feet). The doctors followed a similar treatment regime and according to the abstract the "plantar hyperkeratosis showed a remarkable improvement."

I'm a little worried that Ion's treatment is being seen solely in plastic surgery terms. The underlying problem in all of this is that Ion has virtually no resistance to the HPV virus. I still think interferons and acitretin could be playing a big part in his treatment along with the heavy duty plastic surgery work.

[historianita]

Eric--Like you, I thought it odd drugs were not mentioned as being part of Ion's treatment, but Petrica wrote that for reasons of "deontology and professional secret" she won't reveal all the details of his care until after the documentary is aired. Perhaps interferons are part of his care and we're just not hearing about it yet. (Although I don't know why such drugs would be a secret. Then again, I don't know Romania, or what kind of waiver the Discovery Channel would make someone like Petrica sign.)
I think you're right that interferons and acitretin could be crucial to solving the problems with Ion's feet, but I guess that, for now, we have to trust that his Romanian doctors have this information. Of course, it's difficult to assume that Ion will get good care when this was obviously not the case for at least 24 years.
I don't know about you, but the stories of Ion & Dede resonate with me in way I don't even fully understand. Maybe it's because their afflicted hands to do not allow them to touch or be touched. Or that their disfigurement seems more reptilian than mammalian. Or I identify with their outsider status and struggle to get healthcare. (I live in post-Katrina New Orleans, where the US healthcare system is even more fucked up than usual.) I think about Dede and Ion every day and send them good wishes.If I were the kind of person who prayed I would pray for them.

[Sela]

As you both state above, I too was worried that no mention of drugs was mentioned. Historianita, I agree with you about the way the stories resonate.