Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone. However, we are presently working on a listing of doctors with Rombergs experience.

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My Daughter Has Rombergs Syndrome
August 2005

I'm (almost) 46 and living with my husband and three sons. Our daughter lives on her own with her boyfriend, since the beginning of this year. This story is about our daughter. She's 19 year's old and she is expecting a baby in December of this year.

Last year (2004) there was a thin blue line to be seen, starting in the middle of her forehead, right under her hair. This line stopped above her nose. Nothing to worry about, we assumed, until last March. The line wasn't just on the surface of her skin but it became deeper. Underneath the scar it felt "empty", so she told us.

In March 2005, we searched on the Internet for similar scars like the one our daughter has. We soon found out that we were dealing with Romberg Syndrome. My daughter never doubted. Everything that was written, fit the description of Romberg.

I was shocked! My only daughter- my beautiful child.......this was a nightmare! I cried a lot (when I was taking a shower in the morning and late at night, when I was walking the dog). These tears had to be cried but I held control for the sake of my day-to-day life. I'm working and studying, I'm a wife and a loving mother. And last but not least, I had to support my daughter who stayed very "down-to-earth" under the new circumstances. This period lasted about three weeks.

In this time I made myself a plan. I wanted to see a neurologist and a dermatologist. I wanted a MRI-scan and I preferred a treatment in an academic hospital. About 10 minutes before we were expected at the neurologist (first visit), my daughter told me she's pregnant. I think you can imagine how I felt. My daughter has a rare disease, there's no cure and she's pregnant........what's the future of this baby?

I told my daughter I was very pleased for them and at the same time, very worried. She understood my worries and we talked about these mixed feelings for quite some time. The female neurologist (who's in charge of the first researches) of the hospital, ordered us to do some research. My daughter's blood had to be tested and the doctor wanted an echoscopy of the veins in the neck. We had to see a dermatologist for the scar. An MRI-scan was also part of the research. The blood tests and echoscopy were normal.

The dermatologist in the hospital, recognized the scar at once, which gave me hope. I've learned that this Romberg Syndrome is a rare disease, so it was a big relief for me that he knew. He was very cooperative but advised us to go to an academic hospital for treatment because of the neurological symptoms. My daughter once wasn't able to speak for about half an hour and her arm moved without control. Serious business........

The MRI wasn't possible because of the early pregnancy. We were told by the neurologist to go home and come back after the baby's birth. No more research, no treatment whatsoever. You can imagine this frustrated me. Doing nothing but waiting for the Romberg Syndrome to get worse and worse, is not what I had in mind. I felt very determined to fight for my child. I felt strong and convinced there had to be something to improve her situation.

In the meantime, I talked with lots of people about our daughter. Sharing this story helped me to cope with the situation. One day somebody advised me to take a look on the website of a Belgian scientist. This scientist had cured himself after he'd been electrified. It was however the personal experience of the person who advised me, that convinced me to give it a try. In Dutch we have a saying: "baat het niet, schaadt het niet". This means something like: if it doesn't help, it doesn't bring any damage either.

The remedy this scientist found, is based on the reaction of plants when they see/feel danger. I ordered this remedy, which is divided in 28 portions for 28 days, for my daughter. After 6 days, my daughter told me she saw a light improvement. The scar became a different colour and was also less deep, according to her. For us the improvement was not visible at that moment but after 28 days it certainly is!

Underneath her scar, she definitely feels something growing again. The empty feeling is gone. When she's knocking on her forehead the sound in her head is different than before she took the remedy, because of the growing. The scar is more to the surface, so there's a very clear proof that this remedy worked for her. Of course this doesn't mean it will help other people as well but it might. You can take a look on the following site: www.alfonsven.com

Now my daughter has finished this remedy, I contacted the scientist again. It's possible my daughter needs a second treatment. I will keep in touch to inform you about my child.

Inge in Alkmaar, Netherlands

Feel free to leave a message for Inge at rombergs@hotmail.com.

All photos and text are the property of the families represented, and may not be used without their consent.

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