Top Tweets for #ALECT2
Great review. Only thing I'd add is that #ALECT2 #amyloidosis was identified in 2009. It disproportionately impacts Mexican Americans (not all Latinos), people of Chinese and MENA ethnicity.
In the entire US, ALECT2 is<3% of renal amyloidosis cases but in the southwestern US (with our high Hispanic population) ALECT2 = 54% of renal amyloid dx. My Mexican mom died of amyloidosis in 2003.
Still no known cause and no treatments.
Hope @Alnylam will restart their natural history study.
#Nephology #kidney
Sadly #Hispanic representation in clinical trials is abysmal. Here's a slide I presented at 2025 ASCPT Conference re URM enrollment in #ALS and #amyloidosis trials.
My Mexican mother died of #ALECT2 amyloidosis... a subtype that disproportionately impacts Mexican Americans and people of MENA descent. Yet there are no treatments for ALECT2, no current studies, no natural history studies. @NIH we must do better for people in the #raredisease communities.
#HispanicHeritageMonth #LatinosInMedicine #nephrology #HispanicHealth #chicanos #latinosenusa
While the numbers can vary, one thing is clear: Hispanics face real barriers to accessing clinical trials and, as a result, treatment.
Please mention #ALECT2 which is the 2nd most common type of #renal amyloidosis.
ALECT2 disproportionately impacts Mexican Americans (not all Latinos) and people of MENA, Indian & Chinese ethnicity.
โข Lost my Mexican Mom in 2003 to amyloidosis.
โข Took nearly 10 yrs to be dx'd.
โข Dx'd as "primary" AL, but got worse with VAD chemo.
โข In 2008, ALECT2 identified.
โข Now suspect she had ALECT2
#ALECT2 is not rare... just rarely diagnosed.
#RenalPath #Amyloidosis #Nephrology #MedTwitter
#RareDisease
Took my Mexican Mom almost 10 years to be diagnosed with "Primary" Amyloidosis back in 2003. She died 7 months later. Now we suspect it was actually #ALECT2 #amyloidosis that wasn't recognized until 2008. ALECT2 disproportionately impacts Mexican Americans (not all Latinos) and people of MENA ethnicity.
I live here in #Arizona where 31% of our population is Hispanic. Yet two top #nephrologists were not aware of the disproportionate number of Mexicans that are impacted.
โข ALECT2 = 2nd most common form of Kidney & Liver Amyloidosis
โข ALECT2 = 5% Amyloidosis cases
โข Kidney Disease = 1.3x higher among Hispanics
โข Liver Disease = 2x higher among Hispanics
โข ALECT2 most prevalent in Southwestern US
โข 2% of kidney biopsies in the Southwest = ALECT2
โข 54% of Amyloidosis in Southwest = ALECT2
โข 88% of ALECT2 patients in Southwest = Hispanic
How many Mexicans with kidney and liver disease actually have undiagnosed ALECT2 amyloidosis?
Why are there so few Amyloidosis COEs and trials in the Southwest?
@Alnylam how can we help restart the ALECT2 natural history study?
#nephrology #nephrologist #kidneydisease #renal #NAFLD #HispanicHealth #raredisease #UndiagnosedDay
@Amyloidosis_ASB @Amyloidosisfdn @Amyloidosis_ARC @BU_Amyloidosis @AmyloidosisDay @1amyloidosis
@ALect2A @AaronGoodman33 @MayoAmyloid
@SenRubenGallego @RubenGallego
@SenatorLujan @SenAlexPadilla @SenCortezMasto
@RepEspaillat @RepDarrenSoto @RepSylviaGarcia @JoaquinCastrotx @RepRaulRuizMD @RepBarragan
@SenAmyKlobuchar @DorisMatsui
Today is #UndiagnosedDay ๐งฉ๐
NORD is proud to share resources to support #undiagnosed and #misdiagnosed patients throughout their journey, with the hope that they can find a correct diagnosis sooner.
Learn more and explore resources on the NORD website today: https://t.co/MovrUBVVaY
#RareDisease #RareDiseases
@Myeloma_Doc Thank you. I wish we could get @Alnylam to restart its #ALECT2 natural history study & some researchers would try to identify why it disproportionately impacts Mexican Americans & people of MENA descent. But with recent changes impacting NIH, that sounds unlikely.
#amyloidosis
@TheMillennialMD @MichaelGalvezMD @MiMentorOrg @NHMAmd @LmsaNational Lack of diverse MDs impacts trial participation
#ALECT2 #amyloidosis disproportionately impacts #Mexican Americans (& MENA), yet dearth of clinics, trials, trial sites & Spanish speaking MDs where we live
FDA: mandate enrollment & ethnicity reporting
#MedTwitter #latinos #DEI
Happening Now! Don't miss Dr. Nelson Leung speaking about the implications of kidney involvement in #amyloidosis patients with #AL, #ATTR, #AA, #ALECT2, and other forms: https://t.co/6qWfeWsRzL
๐
#ARCTALKS Webinar: Monday, August 21
Leading #nephrologist Dr. Nelson Leung will focus on the implications of kidney involvement in #amyloidosis patients with #AL, #ATTR, #AA, #ALECT2, and other forms: https://t.co/6qWfeWsRzL
๐
#ARCTALKS Webinar: Monday, August 21
Leading #nephrologist Dr. Nelson Leung will focus on the implications of kidney involvement in #amyloidosis patients with #AL, #ATTR, #AA, #ALECT2, and other forms: https://t.co/6qWfeWsRzL
@BPMonia As an advocate in the #ALS community & a family member of 2 people affected by #amyloidosis, we are incredibly grateful for the brilliance of the @Ionis scientists. Please tackle #ALECT2 next! The #RareDisease community needs you!
Thank you @ionispharma for changing lives!
@US_FDA Asking @US_FDA to require trials in URM communities
#ALECT2 is type of fatal kidney & liver #amyloidosis that predominantly affects Mexicans but few clinics & fewer #clinicaltrial sites in SW
62M #latinos but no #LECT2 studies
@Alnylam @ionispharma
#NMHM2023
@FDAHealthEquity
@FDAPatientinfo @US_FDA 19% of US population = #Latinos
๐น#ALECT2 amyloidosis almost exclusively impacts #MexicanAmericans
๐น88% of amyloidosis in the SW is ALECT2
๐นNo ALECT2 trials
Consider locations of all #Amyloidosis trials. Sparse among high density Latinos populations in the SW
#DEI #Diversity
My beautiful Mom is Bobbie (1:14)
Took 7+ yrs to be dx'd w #Amyloidosis
Died 7 mos later...
On Dec 26, 2003
"If you aren't looking for it, you won't find it!"
~ Dr Matthew Maurer
https://t.co/oKOMPUTC5t
#latinasinmedicine #ALECT2 #Hispanic
#AmyloidosisAwareness #Nephrology
Sadly a #RareDisease called #Amyloidosis took the life of my mom in 2003. Now my aunt likely has an inherited form of TTR amyloidosis as well.
Thx @MLB for helping raise awareness!
https://t.co/2jGzWoGmhK
#AmyloidosisAwarenessMonth
#AmyloidosisSupportGroup
#ALECT2
30 types of #amyloidosis
What type did #Musharraf have?
What organs affected?
AL amyloidosis is most common, but #ALECT2 is common among Latinos, Egyptians & Punjabi communities. Other common types = ATTR, AA.
Important opportunity to raise awareness.
https://t.co/xScEqxAmpO
Pakistan's former President #Musharraf passed away today, after suffering from a chronic #RareDisease called #amyloidosis
What do we know about this #rarecondition?๐๐ผ
https://t.co/X717spHrrrโฆ
@sherryquis Don't yet know... waiting on biopsy
When mom was dx'd, they only knew about 2 types of #amyloidosis. Thought she had AL. Now they recognize 30 types. We suspect she may have had #ALECT2, which is common among Latinos
My aunt is Swedish & unrelated but both with macroglossia
19 yrs ago today, Mom gained her angel's wings.
We lost her to #amyloidosis, a #raredisease that afflicts 5k/yr.
Symptoms missed for yrs. Once dx'd, she only lived 7 months. Now my aunt has it too.
Mom's Legacy
"In all that you do, do everything in love"
~1 Cor. 16:14
#ALECT2
@MayoTransplant @CyclingDoctor My Hispanic Mom died of #amyloidosis in 2003.
Then it was called "primary" amyloidosis, but likely AL or #ALECT2. Now my unrelated aunt - by marriage -- has been dx'd. Waiting on biopsy but suspect AL. Lived near each other as adults.
Biostatisticians - What are the chances?
Mom died in 2003 from #amyloidosis. 10 yrs to dx, 7 mos til death. No organ biopsies but chemo expedited her death.
Bc we're #Hispanic from NM & she didn't have skyrocketing #FLC, we now wonder if she had #ALECT2 & not AL Amyoidosis
See you tomorrow!
https://t.co/7aBMjkeOGn
On behalf of the Amyloidosis Program of Calgary, it is a pleasure to invite you to attend our 4th International Amyloid day to be held on Oct. 20, 2022 virtually. We dedicate this event to our mentors and educators! Free registration. See link below
https://t.co/OdVUoSo0D7
Over 90% w #ALECT2 #Amyloidosis are #hispanic, predominantly of #mexican descent.
Among ALL decedents in NM, ALECT2 amyloid was ID'd in kidneys of 3.1% of ALL #Hispanics - most had no amyloidosis dx
https://t.co/LegTQTuoPr
#HispanicHeritageMonth2022 #nephrology
@RepRaulRuizMD
Wow! Over 90% of patients w #ALECT2 #amyloidosis were #Hispanic. How many cases of CKD are missed dx?
#nephrology #NephTwitter #CKD #kidney #kidneydisease
@LmsaNational @alejandro_diez_ @TheMillenialMD
@MichaelGalvezMD @LatinasInMed @NHMAmd
@RepRaulRuizMD @SenCortezMasto
โALECT2 amyloidosis affects predominantly the Hispanic population, and in a large study over 90% of patients were Hispanicโ https://t.co/szmPJ8BHZF
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