Discover and read the best of Twitter Threads about #hereditarypancreatitis

Most recents (9)

I can’t.
Do they not realize that pulling individuals from #opioid medications also causes suicide ideation and attempts?
#Paincare in the US is awful. Maybe there are pockets where quality care can be accessed but as a caregiver and advocate for many w #hereditarypancreatitis 1
it’s inadequate, stigmatizing and traumatic. I am tired of waiting. I witnessed the traumas my husband and kids went thru and my hope was to raise awareness that others would not have to suffer the same. The #CDC as well as other entities imo has put the horse 🐎 b4 2/
the cart. Why not look at developing options have less risks instead of trying to gaslight those that have found relief and QoL thru LTOT. Quite honestly it’s a ‘cluster’ and not getting better. I understand that there are wide variances of pain and intensities 3/
Read 5 tweets
Still struggling with the wording of this invitation. ‘#COVID-19 has exacerbated the raging #opioid crisis driven by the nation’s more than 50 million #pain suffers......’. I have contacted both @RepJudyChu & @RepWalorski office to express my concern & to 1/ Image
attempt to understand why the blame for the #opioidepidemic seemed to be placed at the feet of those that have #chronicpain. In the past years the # of #opioid pain medication prescriptions have plummeted yet rates of overdose climbed. Many individuals with #chronicpain 2/
who benefitted from treatment from #opioids have been pulled off & abandoned; their #QoL decreasing & suffering increasing. My kids & my husband were/are part of the 50 million that experience/experienced #chronic pain due to #hereditarypancreatitis & #pancreascancer 3/
Read 5 tweets
My kids have #hereditarypancreatitis. The pancreas can weak havoc on ones body; nausea, malabsorption,vitamin deficiency and #pain; horrible pain. The option we were given was 2 remove #pancreas, spleen, half the stomach & other ‘parts’ to 1/ Image
ensure that there 75% of developing #pancreascancer did not occur & that it would address their pain. It did not. They both came out with multiple complications. While this transplant CAN produce good outcomes there are a number, such as my kids left with #pain 2/
and multiple life issues. Many have been abandoned by the hospital that did the transplant & are having to navigate the system to figure out care. When you have no #pancreas, no spleen, only half a stomach constant #pain, malabsorption & an entire host of issues 3/ Image
Read 5 tweets
The number of #patients with #chronicpain being harmed due to false narratives re #opioid #pain medication continues even while #CDC revisiting guidelines as they know it has been misapplied & manipulated by anti opioid entities 1/
Untreated #pain does harm in so many ways. Imagine a mother having to beg for her child not to have to lie withering in a hospital bed in pain due to #hereditarypancreatitis. Being told to have her daughter use #GuidedImagery to address the horrible pain. This is criminal 2/ Image
Imagine having your children begging to just die due to pain. This has been common for many kids w #pancreatitis due to lack of addressing their #pain. #EssentialOils, #GuidedImagery, #Accupuncture will NOT work in the middle of a flare. It is criminal that this still occurs 3/
Read 3 tweets
@ProjectECHO I just wanted to share that as a #caregiver of two adult children with #chronicpain these screen shots feel incredibly biased. I have watched my husband & my children experience #stigma by medical professionals due to the fact they had/have #chronicpain 1/ ImageImage
my husband passed due to his illnesses #pancreascancer #hereditarypancreatitis. My kids live each day in #pain. We have tried many other options, some of which actually have caused life long injury. #Opioid pain medications have provided them some QoL. They have often 2/
been questioned if the pain is really that bad? Curious if you teach about malabsorption issues? Both my kids have them. Unfortunately due to lack of knowledge (even though throughout chart) about malabsorption in relation to all medications she has been accused 3/
Read 8 tweets
For those that have #hereditarypaincreatitis there is few options & those options often have large risks. One option is the removal of the #pancreas as well as other organs. At times this benefits. Others it causes more harms & families find 1/…
themselves alone & abandoned because the surgery caused greater harm than benefit. We are cast out, on our own finding options for those complications, for the ongoing pain. While I am happy for those that benefit we MUST find a less drastic option to address this disease 2/
This organ is so often ignored many people outside med field often not familiar with it. While there are some experts there is still so much to learn about this organ. #Diabetes #HereditaryPancreatitis #PancreasCancer 3/ Image
Read 3 tweets
This picture takes my breath away, it reminds me of my kids. While they have disagreements, they have formed a unbreakable bond because of the disease they share. This picture sums up their relationship. Two memories distinctively come to mind. The first was when they 1/ Image
were very young. About the age of the children in the picture. I had the flu, my husband was out of town for work and my son woke up in a flare. I tried to comfort him, to take care of him but I was so ill. My daughter hearing the commotion came up. She immediately 2/
took over. She retrieved a bowl from the kitchen & took her brother by the hand into the spare bedroom. For the next several hours she rubbed his back & stomach. She held the bowl while he emptied the content of his stomach into the bowl & there was nothing left. She did this 3/
Read 8 tweets
From #CDC website ‘Improving the ways opioids are prescribed through clinical practice guidelines can ensure patients have access to safer, more effective chronic pain treatment while reducing risk of opioid use disorder’. What I have seen as a parent of children w #chronicpain 1
as well as an advocate for those with #hereditarypancreatitis is increased stigma, lack of access to a medication that has worked for many, malpractice and deaths due to #suicidedue2pain. I find it inane that physicians will prescribe essential oils (lavender) to a child 2
in the midst of a pancreatitis attack for fear of addiction. #Untreatedpain and under treated pain has significant consequences particularly in children. The harm done since the release of the guidelines has been significant YET actions to address these harms and 3
Read 6 tweets
At @RepJudyChu & @RepWalorski could you please provide additional information on the congressional caucus held on July 24 on #chronicpain? The invite for this indicated that individuals that have #chronicpain are responsible for current #opioidepedemic. Even with 1/
#patients with #chronicpain being ripped of opioid pain meds, with the number of prescriptions at all time low, SUD & overdoses continue to rise. This is NOT caused by those w #chronicpain. Respectfully, we have been harmed by such rhetoric used in your invitation 2/
The language in your invitation perpetuates the stigma those with #chronicpain face which impacts access to care. Meet my family (older pictures) My husband & children had/have #hereditarypancreatitis #PRSS1. A rare condition in whic one of symptoms is horrific pain 3
Read 11 tweets

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