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Leila's Story
It was a normal working day for me in November 2012, filled with meetings here in Bermuda. I had just turned 51 years old and I worked for a professional trade association representing reinsurance companies here in Bermuda. As the day progressed I began to feel unwell, having flu-like symptoms. So by mid-afternoon, I excused myself from work hoping that a few hours of rest would do the trick. That was a Wednesday but by Friday, I was feeling much worse. So much so, that I called my mom to come and stay with me at the house. That evening, I awoke with a terrible headache, light headedness and just feeling so unwell that I could not sleep. As symptoms progressed, I asked my Dad to take me to the hospital.
Upon arrival at the local hospital, the team of doctors were puzzled at my blood results which showed that my platelets were only at 4000 (normal range 150,000 to 450,000). They decided to repeat the blood tests to make sure there wasn't some kind of error. The results were the same, so they got in touch immediately with the Lahey Clinic in Burlington, Massachusetts to get their opinion. The long and short of it was that I was given a piece of paper with a possible diagnosis of "TTP" written down and told I would have to be flown by air ambulance, off island to Lahey Clinic later that day. I had no idea what TTP was. I had never heard of it! I began infusions of Fresh Frozen Plasma (FFP) and high doses of prednisone whilst I waited for the plane to arrive. Plasmapheresis treatments began the next morning.
It was a scary time for my kids and family; having mom whisked away hundreds of miles not knowing what the outcome would be. I was fortunate that my twin sister was able to accompany me and I owe her a great deal for the love and support she showered me with. I was in the United States for about six weeks in total. In the first instance, I responded really well to plasmapheresis and my platelet count went right up. After about nine treatments the doctors stopped and we waited three days to see what would happen. Unfortunately, the platelets fell so I had to begin plasmapheresis all over again.
J
oin Leila, her "Bermuda Gold Team", and
the TTP community
from anywhere in the world
on September 17, 2016
to improve the prognosis for all TTP patients.
Participate in the
Walk to Answer TTP Together
to help raise life-changing funds
for TTP research!
Register as an individual or team of 10 HERE.
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I have had two relapses since 2012, one a year later and the second, last summer, 2015. I received plasmapheresis followed by treatment with Rituximab which meant I was away from home for about 6 weeks each time.
Living with TTP has often caused me to be anxious. I understand that there is no cure and that we don't know what brings on a relapse (although with my case, we believe it has something to do with the reduction in the ADAMS-TS13 levels). It would be great if we could have a menu of options of what we could do to avoid the 'next time'.
I am learning to enjoy each day and make the most of time with family and friends. The greatest gift TTP has given me is the gift of perspective - what really matters. I still work full time, travel for business and maintain a busy schedule with my two children. This helps to fill the days with 'life' so that I can set aside my fears. I enjoy cycling, walking my two dogs and hanging out on our beautiful beaches and of course, my kids.
Life can certainly throw you some curve balls; but I feel grateful for the second chances and for the amazing people I have met along my TTP journey.
Leila Madeiros
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September 17, 2016
$20 EACH or $150 FOR TEAM of 10
J
oin the Movement to Raise Awareness & Funds for Research.
Walk in your community for 2 hours. Individual and team registration
available.
T-shirt & custom donation webpage provided.
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Register your TEAM of 10 for the Walk to Answer TTP Together!
MAKE SOME NOISE
while you walk!
E
ach team member will
receive a pair of
Awareness Thunderstix!
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REQUEST FOR RESEARCH GRANT PROPOSALS
The Answering TTP Foundation is pleased to announce intent to fund a Canadian idiopathic TTP patie
nt perspective study.
The purpose of this study is to generate a published article (in a medical journal) describing a deeper understanding of the patient experience in Canada to inform physicians and to describe the need for the development of a Comprehensive Care model for TTP.
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Registration NOW OPEN for the 2016
Saturday, September 17, 2016
This is an INTERNATIONAL event.
Walk anywhere in the world for 2 hours.
Registered walk participants will receive a
2016 Walk Button
to pin on their t-shirt. Collect your buttons each year and proudly
display them on your shirt
to demonstrate your continued commitment to TTP. Click here to find out more ...
Register TODAY
as an individual or team of 10, and start FUNDRAISING
for your Walk! Then, on Saturday, September 17, 2016, join the TTP community around the
globe as we
MAKE STRIDES TO SAVE LIVES
by walking for 2 hours!
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Some of the great photos sent in by last year's Walk participants!
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It's up to you to help us reach our Goal!
STEP 1:
Register as an individual or a team of 10.
STEP 2: Set up your fundraising page.
STEP 3: Share your fundraising page with EVERYONE you know!
STEP 4
:
Pick a starting location and time for your Walk on the 17th.
STEP 5: Walk!
For more information, please visit the event website
HERE.
This is your chance to contribute to the TTP movement! Get involved and raise live-saving awareness and funds for TTP research!
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Journal Article
covering
TTP Dinner Symposium
Answering TTP convened a dinner symposium on June 23, 2015, in Toronto, Canada during the International Society of Thrombosis and Haemostasis (ISTH) Congress to bring TTP clinicians and researchers together to highlight the key clinical and research questions in the field.
The
Meeting Report
from the TTP Dinner Symposium on June 23, 2015 was published online on June 8, 2016 (ahead of print) by the Expert Review of Hematology
journal. Authors: Pavenski K, Cataland S, Kremer Hovinga J, Thomas M, Vanhoorelbeke K. Congratulations to the authors.
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The 7th Annual Chance for Change Game Night was our most successful to date. We carried on with our carnival theme, and upped our game by offering new and exciting hand-made carnival games for our guests to enjoy. We were fortunate to receive really unique and exciting contributions for our silent auction, and increased our guest count over prior years. Our event sponsors, both financial and services, contributed to our success this year by increasing their contributions and providing a great deal of support to ensure the evening went off without a hitch. We're very grateful for their continued support.
Diane Williams stepped into the role of MC for our event, and Sydney Bryant Kodatsky spoke to our guests about the challenges she faces with TTP and why their support is so desperately needed.
The evening was dedicated to a dear friend of ours, Margie Castiglione, who passed away this year. Her family was presented with the Heather Leckie Bryant Volunteer of the Year Award for the generous support that Margie demonstrated as a prominent committee member since the inception of the Chance for Change game night.
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She was passionate, honest and knew how to make people laugh.
She opened her heart and her home to our committee.
We will remember what she taught us and keep her in our hearts.
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A heartfelt thank you is extended to the Chance for Chance committee members for teaming up to deliver a first-class fundraising event, that has contributed over $900,000 to the Answering TTP Foundation to date. Without this committee, we would not be able to fund ongoing research grants that are giving TTP patients and families hope across the world.
To see pictures of the 2016 Chance for Change Game Night visit the Foundation's photo book by
clicking here.
SAVE THE DATE FOR NEXT YEAR'S EVENT - APRIL 22, 2017
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The TTP Patient Perspective Request for Research Proposals
The Answering TTP Foundation is pleased to announce intent to fund a Canadian idiopathic TTP patient perspective study t
o examine:
- similarities and differences concerning TTP treatment, relapse and prevalence across the country;
- the effects of treatment (short and long term);
- patient decisions concerning treatment and follow-up (what choices are provided, if any);
- patient education (what information is provided about the disease and its treatment upon diagnosis and going forward); and,
- the long term effects of the disease.
Interested researchers are invited to submit a proposal for committee peer review and recommendation to the Board of Directors by September 1, 2016.
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Doctor to Doctor Connect
Are you a medical professional with a challenging TTP case? Would you like to discuss this case with one of the members of the TTP Medical Advisory Network?
If so, please send an email to us at
[email protected] providing your contact details (name, hospital/office name of where you practice, and preferred method of contact. We will then connect you with an appropriate member of the Medical Advisory Network.
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SUBMIT YOUR PATIENT / SUPPORTER STORY!
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| Now, for a limited time, when you submit your story officially, you will receive our TTP Awareness Hat! |
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Are you looking to take the first step to get involved with the Answering TTP Foundation?
Why not start by sharing the story of your personal experience with TTP as a patient or, if you are a supporter, the experience of a loved one you stood by as they went through or are going through TTP.
Sharing stories will help to strengthen the voice of the TTP community while raising life-saving awareness! Your submitted story will be published on our website to help others facing similar challenges as well as adding a face to this rare blood disorder.
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Patient Education Materials
Patient Resource
Available in print in English and French.
Avail
able for download in English, French, Italian,
Simplified Chinese,
Russian, Portuguese,
Punjabi, German and Spanish from
www.AnsweringTTP.org
Patient Resource
In an effort to spread understanding of this product, Answering TTP Foundation has produced a SDP education piece. This educational brochure is available for free download from our website to everyone.
Attention Doctors
If you would like to order copies of the brochure, at no cost, please
register with us. We would be more than happy to ensure that you receive copies of this educational piece to distribute to TTP patients.
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A diagnosis of TTP, Thrombotic Thrombocytopenic Purpura, is scary and complex. Many patients have never heard of this 3-letter acronym before, nor do they have any idea as to its ramifications. Moreover, patients are told over and over that we "just don't know":
- why it happens
- what may trigger a relapse from remission
- why some patients relapse and others do not
- what the long term prognosis is
- how to ease treatment
- how to cure TTP
These questions remain unanswered because research is limited. TTP is an orphan disease that afflicts 3 in 1 million people per year. It is too rare to make it economical for pharmaceutical companies to specialize research to find a cure. The purpose of Answering TTP Foundation is to help find answers to these questions by connecting patients and supporters. Together, we can raise awareness and raise funds to support patients, treatment and research. Answering TTP Foundation provides the Canadian national TTP community with a supported platform to further common goals including:
- supplying fundraising support and guidance to raise funds for effective TTP research to ultimately find a cure;
- providing patient support to alleviate the feeling of isolation that accompanies the diagnosis of a rare disorder;
- inspiring TTP patients and supporters to share their stories to help enrich the TTP community and garner public support for TTP;
- maintaining a consolidated information platform to disseminate information to the geographically dispersed community;
- providing a unified voice to ensure access to the safest and most effective treatments; and
- developing TTP education materials and distribution initiatives to educate the public and the medical community to speed diagnosis and save lives.
We need your help to improve the prognosis for TTP patients. Help us find the answer to TTP.
Answering TTP Foundation www.AnsweringTTP.org 22 Prince George Dr. Toronto, ON M9A 1Y1 416 792 4656 | toll free. 1-888 506 5458 [email protected] |
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