Behcet's Syndrome Society
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Stem cell treatment in Germany

I have been meaning to call a friend who has just got back from Germany after her second stem cell treatment. She has a condition of the eye at the age of 40 that was to see her blind in a few years. After a few months the first treatment gave her back 5 years of sigh.

Her mother & father suffered from arthritis & they went over first, as good parents do. They both felt wonderful after 1 treatment & a year on her mother is ready for her next treatment.

Also her niece lives in America & meets her there. She is 6 years old & suffers 3 different problems. The snake skin (a condition of the skin)that was on her stomach went compleatly within a few week. Her other problems have improved enough to give her a better life. My friend is not pressuring me but said she has seen what this amazing treatment has don't first hand.

Well I must say I don't know what to do, as the 3rd Infliximab hasn't mad an ounce of difference to her 6 month flair. We hate watching Jaida in constant pain & I feel weak for not jumping at this treatment. I'm scared of all medications but this treatment is so left field. 5 jabs in the butt was all it took. Not 15 tablets per day OR 2 different eye drops OR 2 different mixes to help bowel OR IV Infliximab. All for no relief or the better quality of life we want for our little girl. I hate looking at her round in all parts of the body or the hair now on her back, from the massive amount of steroids. What to do?

It's called Villa Medica. In Germany. My friend said treatment is over 4 days & cost about $12,000 maybe a little more for flights, what price do you put on health?

I'm sitting on the fence at the moment. But I don't want something irreversible to happen to Jaida & think why didn't I.........if only I had that crystal ball we all talk about.

6 Replies

Would love to know more about this as I have bd and at the moment re trying humira and azathiopine. Wouldnt it be lovely not to swollow 25 pills at breakfast and another 27 at tea and god knows how many thru the day. So any info good or bad would be wonderful thanks in advance


Hi Michelle - it would take a lot of looking into, especially with a child. Erssie has posted a similar question which is well worth reading. At least it is giving us hope.

Love Lesley


I am down for stem cell implants and hand/arm surgery under the plastic surgeons at The Royal Free Hospital in London under Prof Peter Butler.

See if you can get a referral to see him. He works at several hospitals around the world, so if you are not in UK/London he will probably have contacts there.


Forgot to add, they have a pretty good Eye department at The Royal Free, I was under Miss Davey and Dr Kidd also attended the clinic there. I am sure Peter Butler, in conjunction with the eye team, could think of a suggestion using stem cell treatment. This is still under development in the UK with lots of research programmes, so I bet they will want to have good candidates on their list for research purposes.


Dear Erssie, so sorry I haven't been on for a few days, Jaida still in the middle ofa rotten flair.

Thanks for the info as we won't be sitting around our whole lives watching this cruel disease ruin her little life. Will be talking to her rhumatologins at the Children's hospital at great lengths. I trust her, she knows us well & thay we are not people to overreact.

Just wondering if the arm & leg troubles you have are the same as Jaida's. she has a massive lump down the outside of her right leg, her neck has also became inflamed. At the start of this flair she was in a wheel chair for 3 days then crutchers for 3 days. At some stage her tendon or ligament(the one that moves the middle finger up & down) in her right hand went, causing a huge amount of pain. She has spent all day in bed sleeping due to migraine, so today was a BAD day.

Good luck & thanks for all the info, we know where to go for more info if we need it. At times Australia seems a long way away but we are so close here, it's great. X


Dear Erssie,

I have just been reading about all your troubles, when it was posted a while ago. Sorry. I hope you get relief. Good luck.x


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