Helpline 07939 046 030

Nimo’s NF1 Story

02 October 2020

Nimo Jama's incredible journey tells us how difficult it is to come to terms living with Neurofibromatosis Type 1 when you come from a different cultural background and do not have access to knowledge and help due to circumstances that life imposes on you. She also reflects on the change in medical care given to those affected by NF over the years, and tells us how Nerve Tumours UK has changed her life, and her childrens lives, for the better.

I am now living with my four children in Birmingham but was born in Somalia, the youngest of 27 children, with my father born in 1895.

I arrived in the UK in 1992 as a refugee. In Somalia there is hardly any knowledge of NF and it is definitely not heard of in local communities. I had lumps and marks all my life, and in talking to my sisters about these, no one else in the family seems to have had any signs. It is normal in my culture to cover my body so the marks were not visible to others and no imminent other problems were present at the time. In 1994, I decided I would like a tumour to be removed from my hand as it was visible to others. My GP sent me to a dermatology unit. A scan was completed, and the unit offered to remove the tumour in an operation, but without recognising that I had NF, but I did not go ahead as this sounded scary and after that I moved to Birmingham, changed GPs and that was that.

Everything changed in 2007 when I got pregnant with my eldest daughter Sagal, who is now 13. It was my second pregnancy. The lumps on my back suddenly were getting more and more. Still the midwifes and doctors did not know what it was, and when I had my daughter in hospital one morning I woke up surrounded by Genetics doctors telling me that my daughter had the same birth marks and we both have NF1. My daughter was fully checked, I got frightened and wanted to block this totally out of my life as Sagal seemed to be fine besides those marks.

However, my lumps started to grow more. Six years later when I got pregnant with my second son the tumours started to hurt for the first time. There was this pain in my hand, I went to my GP and explained what I knew, and I was sent to the orthopaedic unit in hospital to check me once more, but with no further action being taken.


One day I was in so much pain and found this Facebook group, this was the first time I got in touch with Nerve Tumours UK and for the first time that I was able to speak about NF. Members of the group advised me to get in touch with the Nerve Tumours UK Helpline and I called Carolyn, who is also the Specialist NF Nurse in my area. I actually called her in the first instance for my daughter, Sagal, when she was in primary school and did not want to mention my own problems with NF.

Sagal was at primary school, teachers stated permanently that she was behind with her learning but nothing to worry as she will catch up.

But this did not happen. I was more and more concerned about my child and I knew that something was not right. I had already spoken with her doctor, who wrote a letter to the school, stating that the learning issues were related to NF1 and she was seen by an educational psychologist. However, I still was not happy with the situation at school and then I called Carolyn, who arranged direct contact with the school and provided all available information.

By that time Sagal was in year seven and for all this time I had been saying something was not right. Once Carolyn spoke with the school, Sagal was diagnosed as dyslexic. Her memory is definitely affected and she can only follow one instruction at the time. Sagal is worried about getting tumours like me. Thinking back, I might have had the same problems. Now that the Covid pandemic has happened I am even more worried that she will fall more behind, but when getting back to school in September I hope there will be more help now that they know what is available.

Without Carolyn’s support I could not have coped, I could also speak to her as well about myself and I was so happy.

I wish I would have known about Carolyn when my daughter was younger. The school is now part of the iNForm program and now checks directly with Carolyn when there are any issues and what needs to be done to help Sagal. Any other child with NF that will come to this school can be helped directly.

Both of my sons, Samakav, who is now 16 and Suhaib, who is now 6, do not have NF, but both of my daughters have NF1. My youngest daughter Safa, who is now 4, has NF1 as well. She has some pain in her legs, but I do not think it affects her too badly for now but I am watching her development, checking directly with the hospital. There is a member of staff in her primary school, who has NF1 and I can speak with her about our condition and she has now been in contact with Carolyn as well.

"Things have changed so much for me. My GP’s did not have a clue about NF1 and now my children are yearly monitored in the NF clinic at the Children’s Hospital in Birmingham. They are seen by a paediatrician and an optometrist and this is really good."

– Nimo

Hopefully when the Covid crisis has settled down I can go and see my GP again to re-organise my MRI scan on my whole body as my pain has been increasing constantly over the last 6 years. My MRI scan has been cancelled due to the crisis and so has my daughter’s eye appointment, but Carolyn advised and helped on these concerns. I have sent in photos of the swelling on my hand to my doctor and this is monitored.The lockdown, as a family, has brought us closer together but life has its ups and downs. I am looking forward to the restart of the school as learning at home and via video is just not the same for my children and they are missing their friends. We all went for walks during this time and once this is over, I was thinking of visiting my sister in London.

All I can say to anyone is, if you have symptoms, get tested for your own good.

Filter News

Filter by Date
Category
Reset

Luke’s Story

Read More

Charlotte’s Story

Read More

Eden P Study

Currently pregnant? Please consider taking part in the Eden P study

Read More

Jen’s NF1 story

Jen praises the great support received since her NF1 diagnosis, allowing her to thrive & achieve a 1st class degree.

Read More

Eden P for healthcare professionals

Healthcare professionals, who provide support to expectant parents with NF1 are invited to take part in the Eden P study

Read More

Nicole’s story

Nicole has NF2, she describes the preparations and the absolute joyful experience of the birth of her son Lewis

Read More

Johnathan’s story

Johnathon's family are spreading awareness of the importance of attending health checks and advocating for vulnerable people

Read More

CAR Research - exploring family planning decisions

Research Advisors required to help explore what influences decisions about having children and what support would be helpful

Read More

Corporate Fundraising 2024

Find out some of the different ways your company can support Nerve Tumours UK

Read More

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK