Neurofibromatosis and the COVID-19 Vaccine
Many individuals with NF have concerns about whether their NF diagnosis places them at additional risk of side effects from the COVID-19 vaccine. Fortunately, we have no evidence of specific safety concerns related to the COVID-19 vaccine in people with NF, including no increased risk of benign or malignant tumor growth, pain, or other symptoms. Individuals who are on treatments that can suppress the immune system, such as chemotherapy, should discuss the safety and efficacy of vaccination with their health care provider, as should individuals with an adverse reaction to previous vaccinations.
In addition, some people are concerned about whether the Pfizer and Moderna vaccines, both of which are mRNA-based vaccines, can interact with the NF genes or their mRNA transcripts. Messenger RNA (mRNA) is the RNA copy of a specific gene that is the code used to make a protein. In the case of NF1, the protein is neurofibromin; for NF2 it is called merlin; and for the vaccine, it is a protein that is unique to the virus. It is important to understand that these mRNAs have nothing to do with one another and do not interact with one another. Hence, there is no danger that the COVID-19 vaccine mRNA will have any adverse effect on the function of the NF mRNA or the NFgenes. The vaccines also do not modify the DNA in any way, and therefore do not pose any specific safety risks to persons with any form of NF.
-Written by Bruce Korf, MD, PhD from the University of Alabama Birmingham and fully supported by the Children’s Tumor Foundation Clinical Care Advisory Board.
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i have nf and i am also 6 months pregnant. how bad can that affect me
We’re not doctors, but from our understanding some people have more tumor growth and some don’t. It varies person to person. I would talk to your doctor with your concerns.
My bro have NF1 disorder & got a covid in may 2021. after that he got vaccine, after taking 2nd dose he starting weakness now diagnosed Multiple Sclerosis
It’s very hard to determine if the vaccine caused his MS and if it did it may not be due to NF. Just bad luck. We’re sorry to hear this and hope he is doing okay. It’s something he could talk to his doctors about.
My sister has NF and feels the vaccine has caused tumors to grow. She is in her 60’s could it be due to age or seeing what she believes? She is having them surgically removed. Is there any other treatment that you would suggest?
There has been no science looking at the vaccine causing more cutaneous neurofibromas (skin tumors). There has also not been a lot of people with NF1 saying it has. As people with NF1 get older they can get more cutaneous neurofibromas (skin tumors), so it is very likely a normal process. Getting them removed is probably the best option right now, but she should discuss this with her doctor.
Hi, my son was 9 years old and we have found out he have NF 1 last year. Is safe for him to take his covid vaccine?
Hi, Hariz, and thanks for writing. As of this writing, I, as an individual and not speaking as a practitioner, am not aware of any reporting that indicates an individual with NF is at greater risk than any other from the vaccine(s) and/or any of their known or potential side effects. The best source for this information as applicable to him would need to come from his treater(s). I would also encourage you to read through this thread as there are several differing opinions in the community in regards to the vaccine.
I have NF 1 got a mild case of Covid 19 in Dec 2020 (had runny nose, no smell, fever of a 101, diarrhea, fatigue, lose of appetite) had both shots for the vaccine Months later 1st one didn’t get sick everything was normal 2nd dose I got really sick ( vomiting, fever of 102, severe diarrhea, aches), the booster shot all I had was a sore arm for three days
Tengo NF1 Y tengo las tres vacunas de Pfizer y hasta el momento sin problemas
Thanks, Roberto. I’m not fluent in Spanish but Google Translate states this is “I have NF1 and have all three Pfizer vaccines and no problems so far”
My sons practitioner has suggested he be vaccinated however i assume has limited experience in his disease. My son is 47 yo and has mild learning disabilities and refuses to see a specialist . I have spoken to people with no health problems who have had side affects one who was hospilised . Although this is a minority i would appreciate which vaccine is the safest with his condition
My son has neurofibromatosis and Tourette syndrome and has not had the vaccine for fear of after affects in the future.He has lost his part time job due to his concern.His doctor will not give him an exemption . He has been employed with the same company for 18years. Is there meical evidence that vacine could affect his neurological problem.
Thanks for your inquiry. As of this writing, I, as an individual and not speaking as a practitioner, am not aware of any reporting that indicates an individual with NF is at greater risk than any other from the vaccine(s) and/or any of their known or potential side effects. The best source for this information as applicable to him would need to come from his treater(s).
Hello,
I would like to point out they keep saying that mRNA vaccines don’t change DNA.
This is not true.
mRNA is broken down in the cytoplasm which has a chance to create R-Loops with the Nucleus thus allowing the DNA of the nucleus to be changed.
Molecular Sciences covers this and they refused to acknowledge it.
https://www.modernatx.com/mrna-technology/science-and-fundamentals-mrna-technology
Kyle, thanks for your comment. Your point is well taken re: mRNA vaccines. There is much discussion in the scientific realm that I have seen that has widely divergent opinions re: the mRNA vaccines. As a policy, NF Midwest does not offer specific treatment nor diagnostic advice, but rather seeks to provide information to our community so members can make their own, individual choices, specific to their own situation, in consultation with their respective medical providers. As to my reply, to this point in time, to our knowledge, there has not been any specific guidance as to any greater risk exposure for an individual with NF in regards to taking any of the three vaccines currently being disseminated. That was in reply to the question as posed to us. Thanks, again.