How Naevus International can help patient groups Marjolein van Kessel Patient team leader September 12 th , 2019, Brussels
Introduction Marjolein van Kessel Dafnis 1998-2012 The Netherlands Team leader Patients diagnosis symptomatic NCM Patient Advocate not diagnosed for 13 2019 e-PAG Eurordis years 2016 MPNE 2013 Naevus Global Dutch guidelines: CMN • Pediatric melanoma • Palliative care •
Agenda • Birth • Diagnosis • Treatment removal • Neurological problems and melanoma • Daily life • Palliative care • Achieved • Conclusion Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Birth I was in Tanzania for half a year. I saw a What is the In my 35 few patients with reason behind years as a CMN. Besides control this type of doctor, I’ve and resection of giant nevus? Is never seen suspicious lesions, it due to anything not much could be eclipses during like this. done. pregnancy? India Gynaecologist USA Dermatologist trainer Tanzania/Malawi Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Diagnosis Our neurologist gave some I have consulted MRI results showed "98% very scary statics: 50% three doctors from was clear”. They did not chance it will turn to Delhi and Mumbai. use contrast and melanoma, which is fatal. Everyone has a therefore could not say Unknown but likely possibility different opinion 100%. I am thinking of fine motor skill and/or and method. So about pushing through cognitive deficits. we are quite for another MRI to be After the jaw-dropping 30 confused by now. done with contrast. minute appointment we left. Norway USA India Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Needs at birth & diagnosis • Information • Map of CMN/NCM experts CMN/NCM expert • Patient/peer support in country • Research and registration • Psychological support • Identify needs Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
OCOMEN Participants who rated the importance of outcome domains • 52 Patients and 29 Parents • 63 Professionals Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Core outcome set for CMN Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Treatment removal We considered all I am Egyptian, living and His incision had 100 stitches options here in working in Qatar. I tried my in his back and neck. It did Colombia, South best here in Qatar but lack not remain closed. He was America, but we professional expertise. discharged, and we drove didn't find the best I am writing to seek any the 2.5 hours home. The next option here. Now possible help as I do not day his wound appeared we’re talking with have the financial abnormal and I drove him all Dr Bauer in resources to seek the way back. Chicago USA treatment internationally. Egypt Columbia USA Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Needs in removal treatment • Information • Map of experienced plastic surgeons • Patient/peer support • Psychological support • during/after treatment • family members • Finances surgery/cross boarder healthcare • Research and registration • Identify needs Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Neurological symptoms/melanoma My daughter's legs are This medical journey has become The doctors in different. I saw the right leg an expense that is hard on us and Indonesia are has no power like the left an emotionally taxing journey. I generally leg. Is it because of the was working full time prior to my reluctant to birthmark? I live in Korea . I son’s seizures and on going correspond didn't find an expert . I medical needs. I'm beyond with overseas don’t see other children stressed out trying to care for him doctors like my daughter and navigate resources. Indonesia USA South Korea Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Needs with NCM/Melanoma • Information • Map CMN/NCM experts CMN/NCM expert • Local patient/peer support • Psychological support • during/after treatment • family members • Research and registration • Identify needs MPNE Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Daily life Someone noticed my Has anyone else While he was getting daughter’s shirt was soaked dealt with being his haircut two guys with blood. She had no idea accused of started laughing at what tore her nevus skin this abuse because him hysterically and time. On the back she can't their kids Nevus said “that haircut see it or bandage it herself... looks like a won’t help him with making her feel helpless bruise? all those moles.” and frustrated. USA USA USA Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Needs in daily life • Information • Local dermatologist CMN expert • National patient/peer support • Psychological support • Identify needs Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Palliative care, terminal care and memorial We had a port placed in my son and started Do we stay and fight the immunotherapy on the same day. The port unknown and try to give placement was probably the second worst surgery him more time. Should I he had out of eight. It was painful and it took swoop him up and take weeks for him to recover. It had to be placed on him to the places he the opposite side because the shunt was placed wants to go, or do I ask for on his right side. The infusion was long. more treatments and Immunotherapy takes time to work and it takes hope that we still have planning. It should be used in conjunction with that time. radiation to really make it effective quicker. This disease just does not give you that kind of time. USA Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Palliative care, terminal care, memorial • Information • Local medical team CMN expert • Patient/peer support • Psychological support • Reseach • Identify needs Memorial at Nevus Outreach conference 2018 Birth Diagnosis Treatment NCM/ Daily life Palliative care removal Melanoma
Naevus International • Website with information in 8 languages, soon15 • email contact with Naevus International experts • Yearly conference to exchange knowledge in research • Psychological strategy - organization Anna • Awareness Photo exhibition Do you C me Now
Patient/peer support 18 national patient support group 16 less formal support groups ~20 individual contacts Networks for 2018 Africa Nordic countries Hispanic North America Arabic countries Facebook groups for patient/peer support melanoma, NCM, memorial 2019
Challenges ahead • Collaboration • Psychological support • Research and registration • Easy access to information • Patient journey to identify needs and set priorities
Thank you Questions? Marjolein van Kessel marjoleinvankessel@gmail.com
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