Kate “NF1 Mummy” Your Questions on parenting answered:  World Neurofibromatosis Day 17 May 2021

Kate Morgan, 34, was diagnosed with NF1 as a child. She has refused to let her NF1 hold her back and is now a mother of two girls, Esme & Betsi, a primary teacher & has three degrees. Kate started NF1 Mummy on Instagram and is our guest editor on our Instagram and Facebook on 17 May 2021 – World NF Day. We hope this will support the NF community and may give answers that help others, leading to positive change. 

Here are your Questions answered by Kate and updated from a medical perspective by our specialist NF nurses team: 

1. My second daughter has NF1 as I do and she is now turning 4 - since she is born she cannot sleep alone has anxiety and always wants to sleep in my bed it might be NF related?

It is my understanding that sometimes NF1 can be linked to sleep issues, however, I am not qualified or trained to answer this. If you get in touch with Nerve Tumours UK they will be able to point you in the right direction to get the right support.                                  

Sleep disturbance and poor sleep quality are significantly more frequent in the NF1 patient population. The reasons behind these sleep issues are reported to be multi‐factorial in the literature. (NTUK) 

2. Both of my children have NF. We explained NF to them however the oldest is reaching puberty and has marks and tumours that are visible other children asked him already about this and it is very difficult for him to deal with this - can we do something? At school or how can he explain to the children?

Nerve tumours UK have some great information for both schools and families. I have already passed on their school pack to Esme's nursery who found it very informative. Nerve tumours also have a great community page on Facebook, parents with older children may have experience in things that worked. It is hard especially in the teenage years to discuss your condition, I went through it myself. But I found personally, once I understood my condition I found it easier to discuss it with others. My friends and peers were very supportive once they realised what NF1 entailed.                                  

Unfortunately, the hormonal changes in adolescence often cause neurofibromas to grow more.  It is important to allow your child to ask questions and advise them about the changes to their body in relation to their body.  Obviously, as a parent, you know your child best but it is often recommended to give your child information about their condition on a need to know basis dependant on the type of complication they are facing at that time.  Nf1 is a variable condition and it affects individuals differently.  The Nerve Tumour UK charity funds nurse specialists to help advise parents and schools with issues such as these.  Online meetings can be organised with any parent or school in the country to assist with these difficult conversations.

3. My child has difficulties with seeing and reading and quite often is not concentrated at school and privately we have seen specialists but do you have advice? - We are in Cornwall and there was hardly any school support

Again I can not offer any medical advice I'm afraid but  Nerve tumours will be able to tell you where your local specialised support is. It may be worth getting the school's pack also and passing it onto the SENCO in your school.                                                

School meetings can be arranged with one of the Neurofibromatosis nurse specialists.  Often children with learning difficulties need expert intervention with involvement from a variety of different specialists such as SENCOs, Educational Psychologists, Speech and Language therapists and Occupational Therapists.  Meetings with a nurse specialist can help to inform these important discussions.

4. Since last year my daughter had hardly any school and she already had difficulties we are in touch with specialist nurses but only via online meeting - is there any chance we can help to get her back into school and the learning that she has missed, it was already difficult for her before

Being a teacher I can tell you that she is not alone, many children have found it hard settling back into school after this year. Her learning will come and this is what I tell the parents in my class. I suggest you speaking to the school directly and discussing your concerns, they should be able to make a plan that suits her. Perhaps set some small achievable goals that she can focus on now until the summer.  Again this can be discussed with her teacher, who should be accommodating to her needs.

5. During & after pregnancy did you find you grew more neurofibromas?  I have NF1 too! 

Really good first question. Thank you, yes when I was pregnant with Esme I did have around 2-3 grow, previous to this growth I didn't really have any growth. I am just over a year pp with Betsi & actually noticed one small one on my shoulder this week.                    

Unfortunately, the normal changes during pregnancy can cause neurofibromas to increase in number.

6. Could you give a brief explanation of what NF is?

Great question. NF1 is a genetic condition that causes tumours to grow all over the body, the tumours are normally benign but can cause problems and difficulties depending on where they are. The spectrum is massive, some people are mildly affected whilst others more severe.

Neurofibromatosis Type 1 (Nf1) is a genetic condition that affects the nervous system.  It can cause tumours to grow on the nerves inside the body and also on the skin.  In the majority of cases, these tumours are benign.  Nf1 can cause many health complications and these are variable in presentation from person to person.  As such it is very important that individuals who have Nf1 are seen by their GP or medical specialist for surveillance of their condition. NF1 can also cause learning difficulties and behavioural difficulties, which again vary in presentation.  Neurofibromatosis nurse specialists are available to help support and advise those affected with Nf1 within the UK.

7. How did you find out you had NF?

I was diagnosed around 4/5. I had quite a few Cal all over my body and my Mum said when she rubbed my neck it felt like frozen peas! I have a large plexiforma there now. My fine motor skills were poor too. So with thanks to parents, nursery, teacher and a fantastic then newly qualified GP, I got my diagnosis. (I was a spontaneous mutation, no family history).

8. How would you explain NF1 to a child who doesn't understand and always asks what's that "spot?"

With children, I think honesty is best. You can scale things down and talk on a level they can understand, although I haven’t done this yet with Esme, I work with children who have naturally asked about mine.

There is a lovely short story resource available for children with Nf1 on the Nerve Tumour UK website. https://nervetumours.org.uk/what-are-nerve-tumours/information-documents

9. Did you experience any pain as a child? My daughter (age 1) has NF1 (CAL & Hypermobility)

I suffered from migraines growing up and pain associated with my hip linked to NF. It was tricky. I still get hip pain when I’ve walked or exercised a lot, but I grew out of migraines. With support from my parents, I worked out what eased them or helped them, so I didn’t always have to rely on medication. From an early age, I developed a high pain threshold. 

10. How was your daughter's development as a baby? I have a baby with possible NF1... 

Esme’s development is and continues to be normal. She was a late walker (18 months) but has no mobility problems now. Her development elsewhere was good. Talked from a very early age and has always reached milestones. Please remember babies development varies massively anyway, regardless of NF1, likewise so does NF1 (huge spectrum). 

11. How common is it to develop the condition with no family history?

Great question. So NF1 affects around 1/3000-1/3500 in the UK. Around half of those will inherit it from a parent, with the other half being a spontaneous mutation.

NF1 Mummy 

Here is what Kate has to say on founding NF1 Mummy, her support group for other parents that are affected, or have children diagnosed with Neurofibromatosis. 

I first had the idea to start the NF Mummy community group after talking with a friend. We were talking about how people assume that because you have a condition, such as Neurofibromatosis, you can’t cope or will have difficulties that prevent you from leading a normal life. She commented how having known me all of my adult life, I in fact cope far better than people without a condition when it comes to overcoming challenges. I had previously been considering different ways in which I could spread positive awareness, and after a lot of thought settled on Instagram. So many parents and caregivers use the platform as a useful tool for parenting information already and I wanted to set up a true honest reflection of my life with NF1, and of course having Esme, who also has NF, hoping to support and connect with other like-minded people who may need a helping hand. Right now, the community is super active. I have followers from all over the world; USA, Australia, India, many have NF1 themselves or have a family member who has it or they are friends of someone with NF. I try to keep a positive approach to everything that I talk about, such as things that have worked in life or when Esme has done something I’m proud of, like a milestone we have reached together. I don’t like comparing children to each other, so I try and make it honest, without boasting or gloating, it’s just talking about a normal family life with NF1. Another thing I always share are early education ideas.

As a teacher myself and watching Esme grow, I have used many different learning tools, some work, some not so much but others may find it useful. I talk a lot about Montessori as a method of education, this is when children are taught through hands-on learning and collaborative play, which I find works well with Esme. The community has gone from strength to strength during lockdown. So many people have reached out and I have made a lot of new friends. It really has been an excellent online support bubble. I have been fortunate enough to feel as though I always have someone to talk to, which is especially great as I am at home with a baby and a toddler, and my husband works long hours as a farmer. I think going through lockdown has made the community stronger, especially for young mothers. I myself gave birth to Betsi at the start of the first lockdown and know first-hand its been very different. Without the support of friends and family, no ‘mummy’ dates or park dates, it has been tough to balance nursing a new-born and entertaining a toddler. But we got there, we bonded as a family and Betsi and Esme are incredibly close. Betsi is a chilled out, happy and content baby who is thriving. Walking and chatting and she’s not even 1 yet! It was tough, but thankfully we are safe and well, compared to other people's sacrifices, we had it very easy.

All questions submitted to us will be treated anonymously.