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

[Clawfoot Bathtubs]

mmm uhh...

[porkchop]

Thank freaking god.

[WTF]

I guess I'll skip lunch...thanks.

[Eric]

The crucial difference is that Romania has joined the EU and is now accountable to very high standards with respect to the treatment of its citizens. I suspect it's a bit of a culture shock for them. Imagine Haiti suddenly becoming the 51st State of the US. I assume the Romanian authorities were acutely embarrassed by the man's condition and, if truth be told, by the fact that primary health care was being provided by a missionary (I happen to think the missionary is doing a great job). If it was to become widely known that within an EU state, the only health care available for an EU citizen, was provided by an American missionary-lets put it this way-the Romanians would be disgraced. Hence, the magical appearance of the ambulance.

The Romanians are probably open to an action in the European Court of Human Rights for their failure to provide primary health care for the man. I know many in the US are a bit fuzzy about the EU. However, since Romania joined the EU at the start of the year, this man's right are equal to those of any other European citizen, be they Jacques Chirac, Tony Blair, my mother, Kiera Knightly or Bono.

I don't want to discourage anyone from seeking aid for the man in the US, but all those advanced tratments are available; literally, up the road in places like Austria, Germany and Denmark. Putting pressure on the man's local MEP and alerting the institutions of the EU is probably the best route. I put links on the earlier blog posting if you want to contact the man's representatives.

[andy]

could we make this an "after the jump" kind of a deal from now on? pretty please?

[WHILE EUROPE SLEPT]

Well... the highest GDP per inhabitant in EU in 2004 is in Inner London region, with a 303% from average European GDP.

The lowest is in Romanian "Nord-Est" region, with just a 24%!

[Holland Oats]

my guess is he's a smoker and a rightie

[Jesse Hawkins]

The pictures of the man's hands reminded me of a article I saw a few weeks a back about rabbits infected with a papillomavirus, specifically the Shope papillomavirus. I started looking for the rabbit article, and upon finding it I noticed that the article had been updated to include a picture of the man's hands from this article! The article I am talking about is here: http://ww2.lafayette.edu/~hollidac/jackalope.html One of the links in that article points to a collection of images of rabbits that have growths that seem to (to me at least) resemble the growths on the man hands. The images are located here: http://ww2.lafayette.edu/~hollidac/jacksforreal.html

I don't think I am shedding any light on this matter, as most of this information is already available with some simple Googleing, however it might be an interesting read for anyone looking for more information about what they are seeing.

[Mari]

I agree with the above comment about medical care in the EU - as much as any US based help may seem necessary, it might be better to question the European people in charge of this. This will help more in the long run and will prevent any useless travels of medicine between the US and Romania, too.

We're not some backwards continent, after all. =) It's just that eastern European countries were on the other side of the Iron Curtain for a long time, and have developed slower because of this. The effects can still very easily be spotted if one were to travel to eastern Europe, but luckily things should be improving now that we've formed a union.

Money may be handy in this particular case, but as said in the blog itself, the man or his family don't seem to be in any need of additional money at the moment. If this were necessary in the future, I suppose one could always donate. =)

Now, I'm going to tend to that itch on my head that's been manifesting itself since I started reading this. *shudder* I hope the man's going to be able to feel better about his hands some day.

[iam]

I don't think this story as simple.
As far as I understand from the articles (there are much more than the three you posted), a reporter from a local newspaper in Galati traveled to nearby Schela village, talked to the sick man and then started a campaign in the newspaper to raise funds to have the man sent to treatment. The reporter also contacted various state and health authorities to get help for this issue.
Only after a month did the reporter succeed to convince a hospital to have the man interned - all this campaign took place without the knowledge of the sick man, that's why he didn't knew about the ambulance sent for him.
He was taken to a hospital in Bucharest, were he was investigated and found to have a gene disease which can not be fully cured, but through a surgical procedure they hope to at least make him able to use his fingers again.
Also, it turns out that the man had also been investigated back in 2000 and he should have been operated then. Unfortunately the cost of the intervention (about $ 8500) was not covered by his health insurance and he should have paid it himself; but he couldn't afford it, so he remained like this.

[Jacek]

Thanks for the update! Seems that the ball is rolling on bringing this man back to normal life. I'm very glad! Please keep us posted about the improvements to his hands.

Thanks again for the follow up!

[Eamonn]

I don't really have a medical background or know what has been discussed over this topic, but I may be so bold as to point out something. It seems to me that this keratin-like matter is more like the gene for growing finger and two nails is wrong. I have reviewed some photos and it looks like the growth is "stronger" if you will near where nails would normally grow. Could the gene controlling nail growth be in effect coded wrong in his body? thereby not limiting its (I guess?) rate of growth and where it grows. It might be something to lacate and isolate all the genes that produce and control keratin for nail growth.

[Carrot]

I think the keratin growth is caused by warts, but I suspect you're half right, in the fact that the keratin growth is more vigerous near the areas where nail growth would normally occur.

He has skin growths or warts on other areas of his body, such as his face, however they don't appear to sprout the keratin matter.

[noah]

The first article inspired this amazing song by Kate Ferencz: http://www.youtube.com/watch?v=PtqB8X0Dkow

[Marisa Reber]

I have a horse she is only about a year and a half in the United States that has the same kind of growth coming out of her ear I have had vetrinarians look at it but no one seems to know what it is. It seems to be very aggressive it has tripled in size in three weeks and seems to be growing more. I am having another opinion come out to look at the growth but seeing the hands on this man it looks exactly the same. The vet I am having come out is coming from a distance and is interested so maybe she wont just say its a wort and leave it at that. My thing is to find out what it is.

[Carrot]

Marisa, regarding the horse I'm surprised your vet has said he doesn't know what it is. After seeing this thing about the hands I have heard that horny growths from a horse's ear is not too uncommon, and also that they should be surgically removed.

[Helper]

Please Contact US gov NIH help gardinfo@nih.gov
http://rarediseases.info.nih.gov/

http://rarediseases.info.nih.gov/html/resources/info_cntr.html
By Telephone
Monday - Friday, 12:00 p.m. to 6:00 p.m. Eastern Time
(888) 205-2311 (Phone)
(301) 519-3194 (International Telephone Access Number)
By E-mail or Fax
(Answered within 5 to 10 working days)
GARDinfo@nih.gov
(240) 632-9164 (Fax)

[SlimZ]

I always pay much attention to this poor Romanian man. Poor him. I was really moved when i saw the article on the Internet. I can't imagine this situation can happen to the human like us. But nothing is impossible. God bless him. He looks better now and hopefully his treatment will be effective and he can come back to a normal life. Peace.

[Jeppie]

Romania overall is uneducated. I wouldn't want medical treatment there for anything, I wouldn't even take my pet there to get care. poor guy

[Rob]

It a real shame how rare genetic diseases such as this can often go unoticed in these poor countries, i'm sure if he was a citizen in a wealthy country something would have been done about this a long time ago and long before the disease took hold and got the level it is at.

How many more people are there that we dont know about, i for one know of one other person with this same disease.

His name is Dede from Sumatra, he was recently in an Article in a Magazine called "Bizarre"

If something can be done for this guy in Rominia then i'm sure something could be done for the guy in sumatra who judging by the pictures in the magazine is at a far more advanced stage of this terrible disease. I hope this man fully recovers and can then go on to lead a normal life which he is perfectly entitled to.

I CANNOT UNSEEN WHAT I HAVE SEEN. Fucking christ man, this is one thing I never wish I had seen in my entire life. I have seen absolutely horrible and unspeakable things on internet but nothing has sicken and disgusted me to the core like this one has. Why the fuck am I so pissed off? Because I'm going to have nightmares about this for who the fuck nows how long, shit man some things really are better not being publicized. Ugh fuck, I still can't get over how absolutely sickening it is.

It looks like The Thing! Awesome!

[gary]

i feel moved and touched by this tradgic tale of woe and dispair. myself, my wife and all of my family do so hope that you can be helped to find someone who loves you for what is on the inside.just remember its not abot your disgusting looks on the outside its the inside that matters

[gary]

i feel moved and touched by this tradgic tale of woe and dispair. myself, my wife and all of my family do so hope that you can be helped to find someone who loves you for what is on the inside.just remember its not abot your disgusting looks on the outside its the inside that matters

[Eric]

I was reading a medical abstract today, It concerned the treatment of a 16 year old boy with Epidermodysplasia Verruciformis. The doctors opted for:

"oral acitretin at 0.75mg/kg/day and interferon alpha-2a, 3,000,000IU subcutaneously, three times a week. After 30 days, over 50% of the lesions had disappeared, especially on the trunk, and of the remnant, approximately 40% diminished in thickness, with good tolerance. After six months, we observed almost full regression, thus suspended interferon alpha-2a and reduced acitretin to 0.5mg/kg/day, which is still maintained."

This might be an option worth considering in this man's treatment