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Mom and daughter with neurofibromatosis

Posted By Saje (Shaftsbury, Vermont) on 06/23/2011

Hello- I have nf and so does my daughter-she is 4.. What can I do for her so that she does not devlop the growths like I have?? What can I do about mine?? Would like an update to the info from Ted- and appropriate amts. for daughter...THANKS!!

Replied by Wrvt (W Rutland, Vt) on 12/13/2011

This comment is for 'Saje from Shaftsbury, Vermont'. I am also a Vermonter (West Rutland) with this condition. I was wondering where you go for treatment? I am trying to find a local doctor who knows about NF1 but none of my local doc's know anything. I currently go to Dartmouth-Hitchcock and see a childrens doctor that I found on the NF website (ctf. Org). I originally emailed that doctor looking for a doctor that works with adults. Instead he told me to see him. Any suggestions?

Replied by Lisa (Johannesburg, South Africa) on 01/13/2013

I am also affected by this condition called neurofibromatosis and it has affected my life in a very negative way until I went to see Dr. Kam Singh at his private clinic on (17, Allendale Road Leicester, England 0116-270-9141) and he agreed to treat me. Dr Singh and I experienced different ways of removing these lumps and then we come with a technique which was perfect. I had over 500 of these lumps removed and I was happy with my appearance as I was no longer being covered from head to toe with multiply lumps on my skin. (These were all being tumors of the skin nerve).

Dr Singh has developed a new technique which may go on to benefit many other people like myself who has suffered this, very visible stigmata of neurofibromatosis. I believe that those who have the condition called neurofibromatosis should be aware that there is a new technique to have the tumors removed than that, which is currently being used. I have contacted the Neurofibromatosis Association but I was told that because they haven't heard of this treatment they cannot recommend it or advertise it but it worked for me. I have also spoke to Dr's about it but they don't seem interested.

This treatment was not about me having to take any medication but Dr Singh had the tumors removed. The tumors are normally remove is by having them cut out and so on.... But Dr Singh has developed a new treatment and he would often remove about 40 of these tumors in 20 minutes. If I was still in England I would still see him and would have control over this condition.

I am now back in South Africa which means I don't see Dr Singh. Once again I find living with this condition to be really hard. The problem with neurofibromatosis is that there isn't a cure. So although Dr Singh had removed most of these lumps, others have appeared on other areas of my skin. When I was in Dr Singh's care I felt in control over my condition and it felt good.

Replied by Wim (Haaksbergen, The Netherlands) on 03/13/2013

Lisa from Johannesburg 1/13/2013 has described her positive experiences with a new treatment of NF tumors in Leicester GB. My question is, what is new in this treatment from Dr. Singh? I am very interested in it, because my son has NF1 and is seeking for the best treatment there is. I hope Lisa will answer me! Thank you very much.

Replied by Millie (London, Uk) on 04/21/2013

Seems like one big repetitive advertisement for Dr Singh with no helpful information. Hopefully I am wrong in my analysis.

Replied by T (Indianapolis) on 02/19/2017

We have it also the sun brings it out. I heard don't eat meat, don't drink milk, no caffeine and less sugar. This is taking over my life. Can't have them removed, they can come back. I hate having them on my body. My daughter is blind from having giolma and nf1. My son has it in his pelvis area. Trying to find how to get rid of this off my body.

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