Our common goal? #saveahuslives #atypicalhus

A joy to be in this commercial with the same woman who played a major part in saving my life—my former dialysis nurse Melissa. The world needs more souls like hers. #saveahuslives #atypicalhus #ahusstrong

Happy International aHUS Awareness Day! 🙌
Little did we know our family was “growing” in March 2014 when my bro, @slopjockey, was diagnosed with an ultra rare disease that can effect all organs. .
His amazing wife, @badjujulaura, donated her kidney to him 2/26/2016 & they are both doing great! Unfortunately not everyone else with atypical HUS is as fortunate. That is why awareness and education is so important. 👩🏼‍💻
Awareness is like the sun: when it shines on things, things are transformed. 🌞🦋
I am grateful to my aHUS family - for being there for us when we were navigating through this disease. I hope I can help others as much as they have helped me! 💚

Today is aHUS Awareness Day. In February 2017 my life was turned upside down by a life threatening diagnosis. I presented with kidney failure, high blood pressure, low platelets and in need of a blood transfusion. After transfusions, TTP treatment, a kidney biopsy, and multiple tests I was diagnosed with atypical hemolytic uremic syndrome. I was told that there is no cure but one treatment available. By the grace of God I am standing here today able to live my life with my family. I receive infusionsbevery 14 days and will continue to do so for the rest of my life. The hope is that more research is being done to eventually provide a cure for aHUS. Until then I will strive to live my best life and advocate for others that have been afflicted with this rare disease. #atypicalhus #atypicalhemolyticuremicsyndrome #ahus #ahusawarenessday #fightforacure

Just before last Christmas, a young #ChicagoHeights woman arrived at the Franciscan Health Emergency Department with advanced #renalfailure, severe #anemia, #lowplatelet levels and had suffered several seizures. "It came on out of the blue," said Darnesha Bankston, age 23. "I'd always been healthy, and I never saw this coming." Bankston was clinging to life when she was admitted to the Intensive Care Unit under the care of hospitalist Anand Gupta, MD. But thanks to the prompt, accurate diagnosis of a rare #kidneydisease, called Atypical Hemolytic Uremic Syndrome, and fast action by Franciscan Health clinicians, Ms. Bankston's kidney function and blood levels are stable today. "Her recovery is nothing short of a miracle." Read her incredible story on the blog. (Link above in profile.)
#aHUS #hemolyticuremicsyndrome #hemolytic #renalinsufficiency #HUS #hussurvivor #atypicalhemolyticuremicsyndrome #atypicalHUS#ahus24sept #ahusawarenessday #ahusstrong

Atypical haemolytic uremic syndrome is an ultra rare genetic autoimmune disease. Basically this means it's something I was born with which causes my own body to attack itself. In my case this is shown through my compliment system causing my red blood cells to shatter, which then forms clots in my organs. The first time this happened I became very unwell very quickly, and they put it down to the less rare HUS - which is caused by ecoli and does NOT reoccur. Although my disease reoccurred later that year I still wasn't given the correct diagnosis, as it was put down to high blood pressure due to my kidney failure. However I was lucky that my transplant was done at the centre of excellence for aHUS in Newcastle, so when I started presenting with the same symptoms again a few days afterwards they were able to do the right tests and get a diagnosis.
Luckily the only known treatment had just been approved by #NICE which means that since then I have received an infusion fortnightly without a break to stop another reoccurrence. However there's still not much known about such a rare disease, so they can't even pinpoint the gene that causes it. That means my family and any future children could have it and we have no way of knowing. It also means I can't have a transplant from a living related donor as it would be too risky for them and me. Today is #ahusawareness day, and a good chance to promote the diseases people don't hear about very often.

#ahus #ahusawarenessday #atypicalhus #raredisease #spoonie #geneticdiseases #chronicillness #spoonielife #instahealth #life #family #jeansforgenes #lucky #healthiswealth #healthaccount #kidneydisease #kidney #transplant #organdonation #nhs #livelifegivelife #donatemate #graduation

How did we get our awareness day for #atypicalhus? Thanks to our good friends ASHUA - Síndrome Hemolítico Urémico Atípico for sharing the background and all the incredible
work they do!
September 24, 2015 was selected as the inaugural date for the first aHUS Awareness Day because during this same week 60 years ago the term Haemolytic Uremic Syndrome first appeared in medical literature. HUS was given its name by Conrad von Gasser, when he and his research team described in an article for a Swiss clinical publication the illness they had been studying which caused blood clotting, anemia and kidney failure.

On 24 September, ASHUA and other international aHUS community invite all stakeholders in aHUS community to join together and aid visibility to highlight information, insights, and issues specific to aHUS.

#day4 #aHUSawareness #raredisease

September 24th is Atypical HUS awareness day and each day until then I will be posting about aHUS, rare disease or an act of service we do in honor of the aHUS community.
This is what a drug can do! This is the result of theory to trial, from research to results. Atypical HUS currently has one approved treatment (Soliris) with many more in the pipeline. Not all results are like ours but as science advances every year so do the number of lives saved from this disease. Thank you to all those who work tirelessly for to improve the lives of patients affected by this disease. #DAY2 #aHUSstrong #atypicalhus #raredisease #kidney

Thank you Miriam at @bishops, it’s been a while since I’ve added some color. I’m stuck in a different chair today, would much rather be getting my hair did. #fuckcancer #multiplemyeloma #atypicalhus

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