Haemophilia Scotland

10/04/2026

Susie’s story 💬

Susie is a teacher living in the west of Scotland, and a member of Haemophilia Scotland. She lives with von Willebrand disorder, and is passionate about speaking out so other women don’t have to go through what she did.

She was diagnosed at just 13 years old, after her second ever period lasted 8 weeks. What followed was a frightening experience of severe blood loss, exhaustion, and time off school, before finally being admitted to hospital and receiving a life saving blood transfusion.

For years, Susie managed her condition. But it was later traumatic bleeding experiences during the birth of her son that led her to seek further support.

Finding Haemophilia Scotland’s Women’s Group has been life changing for Susie.

Connecting with other women who understand, sharing experiences, and simply not feeling alone has made a huge difference 💛

Stories like Susie’s remind us why awareness, early diagnosis, and community support matter so much.

09/04/2026

Our Financial Wellbeing Officer, Maxie, is now out of the office until early May as she is undergoing minor surgery. She will reply to any emails once she’s back.

If anything urgent comes up in the meantime, please contact our Director, Alan Martin.

08/04/2026

Did you know? 💡

Eight of our nine Board members have lived experience of a bleeding disorder.

That means the people shaping our work truly understand the realities of living with these conditions.

From the support we offer to the campaigns we lead, lived experience is at the heart of everything we do 💛

02/04/2026

What’s the difference between haemophilia A and B? 🤔

Both are inherited bleeding disorders, but the difference comes down to the clotting factor that’s missing.

🩸 Haemophilia A: missing Factor VIII (8)
🩸 Haemophilia B: missing Factor IX (9), sometimes known as Christmas Disease

Haemophilia A is more common, but both conditions require ongoing care, treatment, and support.

If you or someone in your family is affected, we’re here to provide information, guidance, and connection 💛

01/04/2026

How are bleeding disorders treated?

Bleeds are usually treated with an injection of the relevant clotting factor, either Factor VIII or Factor IX. This is known as on demand treatment and works best when given as soon as possible.

For people with severe haemophilia A or B, regular preventative treatment (called prophylaxis) is often used every 1 to 14 days to help stop bleeds before they happen.

But treatment is only part of the picture.

Bleeding disorders are life long conditions with no cure. They can impact mobility, employment, financial stability, and overall wellbeing, as well as limiting participation in sports and everyday activities.

That’s why ongoing support, access to care, and a strong community are so important 💛

At Haemophilia Scotland, we’re here to support you every step of the way.

27/03/2026

The reality of living with a bleeding disorder 💬

For people with conditions like haemophilia, bleeds often happen in joints and muscles, sometimes without an obvious cause. These can be extremely painful and over time may cause long term joint damage if not treated quickly.

For women and girls, heavy or prolonged periods can be a key symptom, and one that is often overlooked or dismissed.

These experiences aren’t always visible, but they can have a significant impact on day to day life, from work and education to physical and emotional wellbeing.

Raising awareness helps people recognise the signs earlier and access the care and support they need.

If this sounds familiar to you or someone you know, we’re here to help 💛

23/03/2026

Could your symptoms be more than “just one of those things”? 💬

Many women live with bleeding disorders for years without a diagnosis. Haemophilia Scotland's Women’s Group brings women together to share experiences, exchange information, access trusted resources, and support one another - because no one should have to navigate a bleeding disorder alone.

Looking for more information? Head to our website 👇

www.haemophilia.scot/women

23/03/2026

19/03/2026

Something exciting is on the way 👀

Our 2026 Events Programme is coming soon - and it’s set to be our biggest yet!

If you didn't know, we run free events throughout the year for everyone living with or connected to a bleeding disorder. Because we know it’s not just individuals who are affected - mums, dads, siblings and partners are a vital part of this community too.

Looking to take part? All events are free, just complete the simple form on our website to register your interest 👇

https://haemophilia.scot/support/events/

16/03/2026

Planning a trip? ✈️🌍

If you’re living with a bleeding disorder, a little extra preparation can make all the difference. From carrying the right documentation to making sure your treatment is stored and transported correctly, taking simple steps before you travel can give you peace of mind while you’re away.

At Haemophilia Scotland, we’re here to help you travel confidently - whether that’s within the UK or overseas. We recommend planning ahead, ensuring you have appropriate insurance, and knowing where your nearest Haemophilia Centre is at your destination.

For our full travel checklist and detailed guidance, visit our website before you set off. Safe travels 💛

16/03/2026

We’re excited to share that our Women’s Bleeding Disorders Conference will take place on Saturday 6th June at the Stirling Highland Hotel.

It’s a day designed by women, for women affected by a bleeding disorder to come together, hear from expert speakers, and build meaningful connections.

📅 More information, including how to register, is coming soon.
But for now, pop the date in your diary and stay tuned.

Funded by Women's Fund for Scotland

16/03/2026

We want to give a massive shout‑out to Dana, who took on the Supernova Kelpies Run on Saturday night — and did it side‑by‑side with her son. They lit up the route together to raise awareness and funds for people and families across Scotland affected by bleeding disorders.

We’re so grateful for their energy, kindness, and commitment to our community. Moments like this remind us how powerful it is when families come together to support others.

If you’d like to support Dana’s amazing effort, her fundraising page is still open:
https://www.justgiving.com/page/dana-ferrar-6