TMA - What Does it Mean...

In the past few years the term "TMA" has surfaced and has been used when describing/referencing TTP. As a result, some Answering TTP Foundation community members have asked us; what do the letters stand for and can you provide us with a less technical explanation so that it is easy to understand.

Ergo this blog post!

TMA stands for Thrombotic Microangiopathy and the meaning behind those words further helps to describe what TMA actually means:

Thrombotic = blood clots

Microangiopathy = small blood vessel problems

The term TMA is an "umbrella" term that describes the following conditions:

• Congenital and idiopathic Thrombotic Thrombocytopenic Purpura (TTP)
• Secondary TTP
• Shiga toxin-producing E Colihemolytic uremic syndrome (STEC-HUS)
• Atypical hemolytic uremic syndrome (aHUS)
• Disseminated intravascular coagulation (DIC)
• Malignant Hypertension
• Scleroderma Renal Crisis (SRC)
• HELLP- Syndrome of Hemolysis, Elevated Liver Enzymes, and Low Platelets that may rarely occur in pregnancy

These disorders are so similar in presentation that it makes it difficult for doctors to differentiate between them and some patients are initially misdiagnosed.

What do TMA disorders have in common?

TMA patients present with the following symptoms:

SYMPTOM	REASON SYMPTOM OCCURS
Fatigue, Dizziness, Shortness of breath	Low red blood cell count
Bruises, Gum/nose bleeds, Minor cuts bleed a lot	Low platelet count
Confusion, Sleepiness, Seizures	Damage to blood vessels in the brain
Decreased urine, Swollen legs, High blood pressure	Damage to blood vessels in the kidney
Fever (more common with TTP)

Patients suffering from any of these "TMA" disorders have a low platelet count due to the clumping of platelets in small blood vessels. This can cause injury to organs such as the kidneys (most commonly effected organ among TMAs), heart, brain, pancreas, and liver.

TMA also causes red blood cells to burst and form schistocytes (deformed red blood cells), which can be seen in the blood smear (a test used to look for abnormalities within the blood). Normal blood has completely round red blood cells and plenty of tiny platelets. When you suffer from TMA your blood will have deformed red blood cells (called schistocytes) and no platelets.

TMA registries have been created worldwide to capture data on patients that present with one of the TMA disorders. Such registries will be beneficial in studying these conditions and maybe providing answers about what causes them, if they have similar treatment methods and if there is a cure.

Here are some links to articles that further describe TMA disorders:

• Thrombotic Microangiopathy and Associated Renal Disorders
• Thrombotic Microangiopathies
• Thrombotic Microangiopathy
• Thrombotic Microangiopathy, Hemolytic Uremic Syndrome, and Thrombotic Thrombocytopenic Purpura.

Please contact us if you require more information by sending an email to Contact@AnsweringTTP.org!

Thrombotic Thrombocytopenic Purpura Information for Patients and Supporters Brochure

A diagnosis of TTP can be a scary and isolating for some patients and their supporters!  One of Answering TTP Foundation’s focal initiatives is providing support and educational materials to TTP patients and supporters, to help alleviate the unknown questions and feelings that accompany a rare disorder diagnosis. That is why the Foundation developed its ThromboticThrombocytopenic Purpura Information for Patients and Supporters brochure. The Foundation distributes this brochure free of charge to TTP treatment centres that register with the Foundation but also offers the brochure free of charge for download on our website HERE!

We are excited to announce that the brochure is no longer only available in English! The Thrombotic Thrombocytopenic Purpura Information for Patients and Supporters brochure has been professionally translated and is now available in French and Italian versions. But we aren’t stopping there! Coming soon this brochure will be available in Simplified Chinese, Punjabi, Portuguese and Russian.

Keep checking back as we will be uploading these new versions to our website as they become available!

The 2013 Walk to Answer TTP Together Spirit Award goes to....

It was a very difficult decision to make, as so many participants in the Walk to Answer TTP Together showed amazing TTP spirit! But the winner of the first ever Walk to Answer TTP Together Spirit Award is….

Pam Smith and her team - Island Walkers!

Island Walkers

Pam and her team did an amazing job of showing their TTP spirit, while also raising life-saving awareness for TTP during their Walk to Answer TTP Together! Not only did they have 20+ people walk for 2 hours in educational walk day t-shirts, they also decorated a small booth with balloons and signage!

For their walk they made unique hand signs that could easily be carried, as well as decorating canisters with the walk logo for small change donations to go towards the team's ultimate fundraising goal!

Island Walkers on CBC

The icing on the TTP Spirit cake was their efforts to also garner attention from a local media station, where they were interviewed for TV, while also attracting the attention of the Canadian Blood Services PEI Facebook Page to get their efforts recognized by posting a picture of their team!

Great job Island Walkers and thank you for your participation in the 2013 Walk to Answer TTP Together!

This year's unique prize that will be sent to Pam Smith (captain of the Island Walkers)!

As we mentioned above, this was not an easy decision for us as so many of you really went for it and showed your TTP awareness spirit across the globe! Check out the remarkable spirit other participants showed during the 2013 Walk to Answer TTP Together!

The Toronto Walkers dressed up with red hats, wigs, necklaces and balloons to show their TTP awareness spirit!

Team Cindy Moes used balloons and bristol board signage to show their TTP awareness spirit!

Audrina's Army had personalized T-shirts made for all team members to show their support for Audrina!

Thank you again to everyone who participated and donated. The 2013 Walk to Answer TTP Together could not have been as successful without you!

The 2013 Walk to Answer TTP Together Top Fundraising Team Award goes to...

Team – Walking for Trevor (Captain: Kathy Downs)

 

Walking for Trevor team - 2013 Walk Day!

This year the Walk to Answer TTP Together raised over $30,000!!!

Team Walking for Trevor helped to raise just over one third of that final total, raising an astounding $11,340.03! An anonymous donor has added $350 to the team's overall fundraising, bringing the final total to $11,690.03! Amazing! These funds will help to go towards life-saving education, patient support and research for TTP.

This is the teams second year participating in the Walk to Answer TTP Together. Two years ago, on September 24, 2011, Kathy Downs lost her son Trevor to TTP. Last year the team formed and walked together as a way to mark the first anniversary of Trevor’s passing and now it has become something they look forward to doing to honor Trevor each year.

This year's unique prize that will be sent to Kathy Downs (captain of the team Walking for Trevor)!

Congratulations to team Walking for Trevor! Thank you so much for your determination to help raise awareness for TTP and funds for TTP education, support and research.  

Click here to learn more about the Walking for Trevor team previously featured on our blog.

Thank you to all those who have donated to and participated in the Walk to Answer TTP Together.