Volume 16 – July 2025

Welcome to our sixteenth LymphUnited Newsletter, including:

• SPECIAL FEATURE – SPOTLIGHT ON…GIRL POWER!

• TOP TIPS FROM OUR MEMBERS

• DO YOU HAVE LYMPHANGIECTASIA?

Ultimately, this newsletter is for your benefit. Therefore, I welcome your feedback or any requests you have for future content.

Contact Matt at Hello@lymphunited.com.

There are some amazing people with lymphoedema that have accepted and embraced their condition and have gone onto make a tremendous contribution to the community, either in raising awareness, fundraising, helping others and in doing so setting a superb example to their peers.

If you visit my website every one on the Meet the Members section is an excellent example of this. lymphoedemaunited.com/meet-the-members and many have featured in previous newsletters.  Many more also share their inspirational story in my second book ‘Lymphoedema United – You are NOT alone’ lymphoedemaunited.com/books

I wish to give special credit to six young ladies that have been a pleasure to work with on a number or projects for Lymphoedema United and have become well-respected role models for others, especially the younger generation.  In no particular order, I proudly introduce you to Nicole Faccio, Didi Okoh, Nathalie Kabeya, Liv Lavander, Rachael Boggiano and Emma White.

There are some amazing people with lymphoedema that have accepted and embraced their condition and have gone onto make a tremendous contribution to the community, either in raising awareness, fundraising, helping others and in doing so setting a superb example to their peers.

If you visit my website every one on the Meet the Members section is an excellent example of this. lymphoedemaunited.com/meet-the-members and many have featured in previous newsletters.  Many more also share their inspirational story in my second book ‘Lymphoedema United – You are NOT alone’ lymphoedemaunited.com/books

I wish to give special credit to six young ladies that have been a pleasure to work with on a number or projects for Lymphoedema United and have become well-respected role models for others, especially the younger generation.  In no particular order, I proudly introduce you to Nicole Faccio, Didi Okoh, Nathalie Kabeya, Liv Lavander, Rachael Boggiano and Emma White.

Nicole Faccio

“My name is Nicole Faccio. I was born with a rare genetic condition called WILD syndrome, which caused lymphatic malformations across my entire body—and therefore, chronic swelling since birth.

Like many chronic illnesses, lymphedema took up space in both my body and my life. For years, I couldn’t find qualified help—and the loneliness that came with that was immense.

There’s a phrase my parents used to say when I was young that has stayed with me: “There’s already too much negativity around this condition—we don’t want you to feel that way about lymphedema.” And they were right.

Armed with what I had learned, a positive mindset, and the love for fashion that shame had once tried to take from me, I redefined how I saw myself—and I made it my mission to help redefine what it means to live with lymphedema.

Through my platform Facciolita, I love showing others how to manage the balancing act of life with lymphedema—while embracing style, pride, and a sense of fun along the way.”

To read more from Nicole and get her contact details visit lymphoedemaunited.com/meet-the-members

Didi Okoh

“My story starts when I was 12 years old, and I realised my left leg was bigger than the other. It then took 4 years and 3 bouts of cellulitis to be properly diagnosed with primary lymphedema at the age of 16.

When I was diagnosed, I had many feelings, most of them being negative because I was hitting my prime teenager years and was beginning to feel self-conscious about the size of my leg. I was getting a lot of comments from my school peers, and strangers would stop me on the street to ask what was wrong or would even take pictures of me minding my own business.

I felt isolated

It took a lot of courage, and self-development to get myself back on the right path, and I honestly didn’t think I was strong enough mentally to deal with such a vigorous condition. But one day, I came to the realisation that I shouldn’t hide away from who I am, and I definitely shouldn’t let other people’s opinions dictate what I do with my life!

The fact that I used to feel so alone is partly why in 2020 I started gradually posting about lymphedema and spreading awareness, so no one should ever have to feel that alone.”

To read more from Didi and get her contact details visit lymphoedemaunited.com/meet-the-members

Didi Okoh

“My story starts when I was 12 years old, and I realised my left leg was bigger than the other. It then took 4 years and 3 bouts of cellulitis to be properly diagnosed with primary lymphedema at the age of 16.

When I was diagnosed, I had many feelings, most of them being negative because I was hitting my prime teenager years and was beginning to feel self-conscious about the size of my leg. I was getting a lot of comments from my school peers, and strangers would stop me on the street to ask what was wrong or would even take pictures of me minding my own business.

I felt isolated

It took a lot of courage, and self-development to get myself back on the right path, and I honestly didn’t think I was strong enough mentally to deal with such a vigorous condition. But one day, I came to the realisation that I shouldn’t hide away from who I am, and I definitely shouldn’t let other people’s opinions dictate what I do with my life!

The fact that I used to feel so alone is partly why in 2020 I started gradually posting about lymphedema and spreading awareness, so no one should ever have to feel that alone.”

To read more from Didi and get her contact details visit lymphoedemaunited.com/meet-the-members

Liv Lavender

“One night during lockdown (then age 13) whilst taking a shower I noticed I had a swelling in my lower abdomen towards the left-hand side. It didn’t hurt and I hadn’t knocked it or injured myself.

Mum booked a Doctors appointment but because of lockdown it was a telephone call back. They agreed they needed to see me face to face to see what they thought. They thought it could be a hernia, so the next day sent me to A&E at the Birmingham Children’s Hospital.

Roll on 18 months after numerous ultrasounds, MRI’S, venograms, lymphoscintigram and appointments. The interventional radiographer spoke to a colleague in London who thought it could be primary lymphoedema…… something which id never heard of. All I knew was that my leg was swelling and not a lot was being done to prevent/stop it.

Before all of this bolt from the blue I was a Dancer since the age of 5, middle/ long distance runner for the schools A team, an A team hockey player, netball player and horse rider

Life has been challenging but lymphoedema will not stop me even though it sucks and I sometimes say why me!”

To raise awareness of lymphoedema, expecially with younger people, Liv has written a chapter in Matt’s book ‘Lymphoedema United – You are NOT alone!’, in addition to being interviewed by Matt in a video recorded during Lymphoedema Awareness Week.  Liv’s family are also huge supporters of Lymphoedema United, with Dan Lavander and Birmingham Moseley Rugby Club raising awareness, especially with men and raising money for the Lymphoedema Research Fund. moseleyrugby.co.uk

To read more from Liv visit lymphoedemaunited.com/meet-the-members

Emma White

“I loved football and my passion led me to join Newport Strikers Ladies Football Club, where I progressed to semi-professional level with Cardiff Bluebirds, representing Wales from U12 to U19. And at 18 I moved to the US as a student athlete on scholarship. I was living my dream.

On March 13th, 2006, during a training session, I suffered a career-ending injury.  

It was during this time that I realised I needed to advocate for myself on a whole new level and Google was telling me it could be something called lymphoedema or compressed veins.

With the realisation that I couldn’t be cured, and that this thing would be progressive I felt angry, upset, sad, depressed… I later learned that I went through the stages of grief.

Whilst my insta journal was initially intended to help me process what was happening to me, I soon realised that my advocacy extended beyond my own journey. This journey has ignited a fire in me. I’ve learned that you must be your own doctor, and empowered advocate.

I’ve joined the Patient Advisory Board for Lymphoedema Wales; and have partnered with two other young adults to build an independent peer support group, our goal to help others to embrace life with lymphoedema and thrive in their unique way. I also secured a $20,000 grant for the Lymphoedema Support Network, thanks to support from my employer – Adobe.”

To read more from Emma visit lymphoedemaunited.com/meet-the-members  her Instagram address is @fitwithlymphedema

TOP TIPS FROM OUR MEMBERS 

You are NOT alone – Virtual & Face-2-Face Meet-ups

By Matt Hazledine

As you may have seen, I have hosted 16 Virtual and Face-2-Face Meet-ups around England, Ireland, Scotland and Wales from February to June 2025.  The purpose of these informal gatherings is to create local friendship groups, providing an opportunity for people to share their experiences, challenges and top tips to people nearby.  Incredibly on several occasions, there were people at the meeting who lived within a few miles of someone else attending, resulting in excitement and relief that there was a new friend nearby to speak to or meet for coffee and chat further.  This made me very happy that these Meet-ups had been worthwhile.

I met so many lovely people at these gatherings and am delighted to list some of the best TOP TIPS that were shared.

Lymphangiectasia is a condition characterized by the abnormal dilation of lymphatic vessels. When it occurs in the intestines, it’s known as intestinal lymphangiectasia or Waldmann’s disease, especially if there’s no secondary cause. This results in lymphatic fluid leaking into the small intestine, leading to malabsorption of fats and proteins.

Causes and Types:

• Primary Intestinal Lymphangiectasia (PIL):

This is a rare congenital disorder, often diagnosed in infancy or early childhood, where the intestinal lymph vessels are malformed or blocked from birth, leading to lymphatic leakage.

• Acquired Intestinal Lymphangiectasia:

This can develop later in life due to various factors like:

• • Secondary to underlying conditions: Conditions that obstruct or damage the lymphatic system can cause acquired lymphangiectasia. These include retroperitoneal fibrosis, constrictive pericarditis, pancreatitis, or certain cancers.

• • Radiation therapy or surgery: These treatments can sometimes disrupt lymphatic drainage, leading to acquired lymphangiectasia.

• • Other causes: Infections, scarring, or inflammatory conditions can also contribute to lymphatic obstruction and lymphangiectasia.

Symptoms:

• Diarrhea: A common symptom, often oily or greasy, due to malabsorption of fats.
• Edema (swelling): Can occur in the legs, ankles, or other parts of the body due to protein loss and fluid accumulation.
• Failure to thrive in children: In infants and young children, protein and fat malabsorption can lead to poor weight gain and growth.
• Other symptoms: Nausea, vomiting, abdominal pain, and potential infection can also occur.

Diagnosis:

• Small bowel biopsy:

Examining a tissue sample from the small intestine can reveal dilated lymph vessels characteristic of lymphangiectasia.

• Other tests:

Stool studies, blood tests, and imaging scans may be used to assess malabsorption and rule out other conditions.

Treatment:

• Supportive care:

Treatment focuses on managing symptoms, including dietary changes (low-fat, high-protein diet), supplemental vitamins and nutrients, and medications to control diarrhea.

• Addressing the underlying cause:

If the lymphangiectasia is secondary to a specific condition, treating the underlying problem can help improve the lymphatic system.

• Surgical intervention:

In some cases, surgery may be needed to remove obstructions or correct malformations.

This is for informational purposes only. For medical advice or diagnosis, consult a professional. AI responses may include mistakes. Learn more

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Refer to lymphoedemaunited.com/volume-15-april-2025