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For families whose children live with Paediatric and Primary Lymphoedema

One families journey of living with a rare disease

An interview with Sebastian’s mother by Pernille Henriksen (@the_lympha)

Published by Gaynor Leech: Founder of L-W-O Community

 

The first few steps in the journey of a rare disease

 

It was March 2018 when my youngest son Sebastian was born. He has congenital lymphoedema. Nobody in the hospital had ever seen anything similar including the midwife with 40 years’ experience. There was no evidence on the ultrasound scan that Sebastian had lymphoedema in his hands. It is normal that they look closely at the hands, to count fingers, but the obstetrician did not find anything out of the ordinary. And perhaps it was for the best. It was better for me not to worry.

As he was born it was evident that his hands were swollen and part of the arms as well. They took him away immediately after the birth to do comprehensive tests and only after one day did, I get him back in my arms. I stayed six days in the hospital, so they were able to perform more test. The original perception that his swelling was due to a wrong position in the uterus was dismissed.

By coincidence, the hospital where I gave birth was also an expert centre for hand surgery. A physiotherapist, head of Modena Hospital hand rehabilitation, was consulted and manual lymphatic drainage (MLD) was proposed as though his swelling was hard it was surely a lymphatic problem.

We were told to consult a rheumatologist in Genova (at Gaslini paediatric hospital) to see if his condition was related to an autoimmune disorder. They checked for faecal calprotectin to see if there was leakage from the intestine. They found no evidence of such problem.

When Sebastian was about 1 month old a paediatric dermatologist, who had researched into the matter, suggested that he might have Milroy Syndrome and to get it checked. In May 2018, a genetic test was done for FLT4, VEGFC and GJC2 genes and in January 2019 it was concluded that he had by exclusion 70% chance of not having Milroy Syndrome.

In May of 2018 we had started physiotherapy with MLD once or twice a week at the hospital, but the therapist was not specialised in lymphedema but rather other paediatric conditions. So, by fortune we came across a therapist who had primary lymphoedema herself and who had trained at the Földi clinic in Germany. Sebastian then had MLD on a more consistent level and trained me in doing it as well. As he had his afternoon nap, I would massage him for one hour every day, and it helped. This therapist also knew of Italian experts in lymphoedema and guided us to Genova.

At a hospital in Genova we were told to also incorporate bandaging however we did not know how to do so ourselves. Which is how we then met (in December 2018) a physiotherapist at the referral centre for rare diseases in Turin who suggested to start as soon as possible bandaging sessions. In January 2019 we got all the materials we needed and together with a passionate physiotherapist. we were recommended in our own area. we learned how to bandage. We could then continue the treatments at home. She would bandage Sebastian once or twice a week in the clinic and then we could do it at night. His oedema improved a lot.

In February 2019 we did a magnetic resonance imaging (MRI) and it seems his lymphoedema is contained in his upper body – arms and hands. When Sebastian is older, they will do a lymphoscintigraphy.

Now he is followed by the centre for rare paediatric diseases in Bologna and they organise any tests he needs to have done. He does take prophylactic dose of antibacterial for a lymphocyte’s subpopulations unbalance.

In May 2019, through a French professor specialized in lymphedema, we sent our blood sample together with Sebastian’s to have a in depth genetic analysis at a Belgian clinic. But we are still waiting for the results. Sebastian did a genetic test in June 2019 in Bologna too, but again we are still waiting for the results.

 

He is susceptible to bronchitis and is followed by a pulmonologist

 

With regards to compression, we tried when he was 3 months old to get made to measure flat knit but it was not working well. It was impossible to get on him. We are now bandaging during the night and allowing him to use his hands and fingers during the day to encourage his development. He has a strong grip and use his hands well. We are always looking to improve the bandaging techniques and seek the advice of experts we are fortunate to meet.

In 2019 we attended our first summer camp for children with lymphoedema organised by CMID, Co-ordination Centre of Piedmont and Aosta Valley Interregional Network for rare diseases, where we connected with other families. Reaching out to others is extremely helpful. This year we have been again – to learn even more and be able to apply these learnings at home.

My advice to other parents is to not underestimate the problem – not to look at this as an aesthetic problem. It is not. Do the treatments which are needed. Seek out patient associations that can support you. Primary lymphoedema is already rare and congenital even more so.

 

Look for information – educate yourself

 

My sons attend the same school and as Sebastian started nursery, I had a meeting with the parents of the class of my oldest son. I explained to them that it was normal for the other children to ask questions about the little brother…that the children would wonder. I asked that they did not dismiss the questions or told them made up stories about how he was going to get over it or that it was nothing. I asked the parents to explain to their children that Sebastian is not different. He is special. Just like everybody else. Those with curly hair, brown eyes, long legs. His characteristic is just larger hands.

 

Two Brothers supporting each other

 

 

Thank you to Sebastian’s mother for sharing the first steps of his story. We wish the family all the best and promise them that the community will take good care of Sebastian once he sets his steps in the adult world.

For more information on primary lymphoedema these links can be useful

https://vascern.eu/

https://rarediseases.org/rare-diseases/hereditary-lymphedema/

https://www.rareconnect.org/en

https://www.orpha.net/consor/cgi-bin/index.php?lng=EN

Successful First Month

When you start a new project there is always that question “Have I done enough?”, even though you know you have put hours into the research and presentation there are always anxious moments.  With our new family’s website launched on 31st July 2020 there was no waiting with bated breath the hit was instant everyone has been truly kind.

There are individual websites/blogs personally dealing with how a family cope with a lymphoedema diagnosis for their child but I believe our website is the first of its kind in the UK where we look at every aspect of living with lymphoedema or lymphatic malformations from a family viewpoint.  Not everyone can understand all the medical jargon used when a child is diagnosed with a lifelong condition like lymphoedema and my aim is to simplify the language and provide useful tips for self-care and wherever possible signpost to a respected source within the lymphoedema community.

We know when a child is diagnosed with a lymphatic malformation that the parent/parents feel helpless and isolated.  They often blame themselves and spend time worrying could they have done anything different through their pregnancy especially when there has been no family history.  Then there are the families whose lymphoedema is hereditary which adds more problems for the family circle.  Our aim with our family support group and this family website is to provide information, support and encourage families to become their own advocates.  The website will complement our family group and we will be able to provide more information and tell the stories of both the parents and the children.  As our understanding of Paediatric and Primary Lymphoedema (PPL) develops we hope to give parents and guardians the tools to be able to manage and self-care for their children living with this condition.

We are also producing short videos to compliment the family’s website like the one below.

 

My Child has Lymphoedema

 

 

 

As a direct result of launching the website there is a new families Twitter account @LWO4families the Twitter account has 27 followers.  The membership of the Families Facebook support group is 103 and 95 of those are families, the other members being patient advocates or health care professionals.  The membership of the families support group is largely from the UK however we have a growing membership from Australia, Europe and the US.  In addition to this, the website has received 2500 plus viewings in the first month.

There is a great deal of work to do and like most websites this will be an ongoing project most of the page titles are now in place and the topics will be expanded in time. Thank you to our members, followers and supporters who have encouraged, supported offered advice and suggestions for this new website.  I would also like to encourage our members to tell their story so that we can publish those in our blog because for each story we publish there will always be an element that will help another family.  If you would like us to publish your story please email me to have a chat at: lymphwhatoedema@gmail.com

This is what one of our parents said about LWO4families:

 

This is great. Thank you. It can sometimes feel like a bit of a lonely journey on an untrodden path, so it feels good to make links with others.”

We love referrals so if you know of a family whose child has lymphoedema or a lymphatic malformation and is looking for support from other families in the same position please introduce them to us they can join our support group at:  https://www.facebook.com/groups/lwocommunity4families they will need to answer two simple security questions and then they can join other parents who are in a similar position.

 

 

Welcome to L-W-O Community 4 Families

Author: Gaynor Leech Founder of L-W-O Community

 

Introducing our new Family Website for those families whose children live with Paediatric and Primary lymphoedema. If you have not been on our website before, welcome!  In 2015/16 I was repeatedly asked by members of our adult support group would I set up a children’s or family support group for those families whose children had been diagnosed with paediatric and primary lymphoedema.  First, let us take a step back, and see how we evolved, and grown into L-W-O Community.

In 2011 when I was diagnosed with lymphoedema, I was not told I had ‘secondary’ lymphoedema neither was I told there was a primary lymphoedema.  There was extraordinarily little information to find, most of it came from outside the UK via the internet and therefore I could not always confirm how accurate the information was. After lots of reading and research in 2013 I set up the L-W-O website together with a Facebook public page.  Have you visited our website?

 

L-W-O stands for lymph-what-oedema because when I was first diagnosed with lymphoedema, I repeatedly said, “Lymph What”?

 

The remaining part of 2013 and early 2014 I was encouraged by supporters to set up a private adult support group on Facebook, this was outside my comfort zone and at the time I had no direction and no or very little social media skills.  In the first month 37 people joined the support group and it was only then, I learned that there was a primary lymphoedema.  This was a steep learning curve and for the following months and years there was a lot more reading, researching, and writing. There were many times when I felt angry at the lack of information available to someone who was diagnosed with lymphoedema. However now as a patient advocate, I am passionate about raising awareness of lymphoedema and supporting in any way I can those who are living with lymphoedema.

 

 Lymphoedema can be managed and treated.

 

Late 2016, and I was still being asked by parents to set up a children’s support group.  Nothing was further from my mind; I had just lost my Mum and four weeks to the day that my Mum died my cousin died after an 11-year battle with breast cancer that, by that time, had ravaged her whole body. The night before my cousin’s funeral my great granddaughter was born so great elation and despite all the sadness of the previous four weeks... 

 

We were ecstatic

 

The following morning hubby and I travelled to Oswestry.  This was the second family funeral in the space of four weeks especially difficult for my Aunt because she had lost her sister, my Mum, and now her only child.  My cousin’s funeral service was held at the Church that generations of our family have attended including weddings, christenings and funerals then on to the crematorium at Pentrebychan Nr. Wrexham. I kept saying to my hubby I could not understand why we had only two photographs of our great granddaughter sent to my mobile phone.

Why was my daughter-in-law not sharing more? Why was she so quiet? Several times my hubby said his usual stock answer “you are imagining things”. Then just as I was about to walk into the crematorium my phoned pinged and my daughter-in-law had sent a message “Has your funeral finished yet? Please phone me when you can”.  The next hour and a half of that time, is a bit of a blur, but I do remember hubby saying, “don’t ring her until you get back to Oswestry for the wake.”

Our lovely daughter-in-law has kept us informed and included us in all aspects of hers and my sons life including their six children for the last 20 years, I hear about the bad things and the good things and I am eternally grateful that she is part of our family. With a deep breath I rang her. She started the call with her usual when something is up “I wanted you to hear this from us before someone else tells you.  You know that lymphie thingy you have.  Ezmae-Kate has been born with it, but it’s not like yours it’s all in her face.” 

 

Me,totally and utterly speechless

 

Suddenly all the procrastination of starting a children’s support group had disappeared and after various discussions, one of our parents agreed to be joint admin with me and the group was launched on January 1st, 2017.  It has been slow to grow however, we have 92 members.  I think this is where my true understanding of lymphoedema has come from as I said at the beginning of this piece, I did not know anything about lymphoedema, I had to learn about secondary lymphoedema then suddenly there is primary lymphoedema which is not just one disease and suddenly I am having to learn about lymphatic malformations.

Over the last three years I have often thought that the children’s group needed its own website.  Up until now there have been two pages on our main website however the time has come to publish a new website.  The children’s support group has had several name changes but while searching for a domain name for the website I decided it needed to be about families and their experiences therefore, both the support group and website have the same name. When lockdown in 2020 pushed us into self-isolation it was time to make our new website a reality.  It has taken 18 weeks to get this new project off the ground and like all websites...

 

We will grow, and the work will be ongoing

 

You might be noticing that it looks different from our normal branding, the logo is still the same and it will be very much a part of the L-W-O Community our ethos is the same.  The new design has new features, new content and is more colourful. I hope you will like what you see, and that you can easily find information.

Looking for some help with a specific issue?  Use our contact page and I will see how I can help or where I can signpost you too.  The same terms and conditions and other policies apply to all our websites, and social media as does our Medical Disclaimer which you will find at the bottom of every page on both our websites.  I look forward to hearing from you when you are ready.

On our family’s website I will have some good tips and advice for coping with your child’s lymphoedema.  I will be inviting parents or interested parties to write a blog and I sincerely hope our families will write blogs telling us their stories and experiences. If you would like me to write about a topic I have not thought of, please,  Send me an email.

Are you on social media? While I cannot discuss personal issues in the public forums I or other parents can chat on our private support group so please come and join us. I do often post links to great articles on our Facebook Community page which is our public forum so if you prefer not to join one of our private support groups give us a like so that you can follow what the L-W-O Community is doing. I would love to have you like our Twitter page or follow me on LinkedIn links are in the footer of this page and all our web pages.

When you see friends or other families who have paediatric, primary, or secondary lymphoedema, that need support I would appreciate you suggesting they check out this website or join one of our private support groups. 

Referrals are always welcome.

 

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