Help Cassandra's Burning, Tender, Aching Pelvis
Donation protected
Great News, Terrible Timing
A project Cassandra (Caz) has been ruminating on for two years, the Disability and Sexuality Access Network, recently became a grantee of the Effing Foundation. Thanks to Effing, DASAN will be able to have an accessible website and a whole lot more. There has been a good amount of interest in the project and DASAN's future seems promising! But Caz is having a really hard time getting anything done because of a severe flare of symptoms on November 24th.
What is a flare?
Cassandra has a genetic connective tissue disorder, Ehlers-Danlos, which has progressed to a more disabling status. This has created a domino effect and caused several co-occurring conditions, such as Mast Cell Activation Syndrome, and pudendal neuralgia, to worsen.
Caz can no longer comfortably (pain level less than 7) walk, drive, or remain upright for any significant length of time. Cassandra needs to see a very particular kind of pelvic specialist, but none of them accept insurance, let alone Medicaid. Therefore, we are trying to raise the money for an out-of-pocket visit.
How much will it cost and why is it so expensive?
The pelvic specialist Caz will be seeing is in the Washington, DC area. The initial 90-minute consult and exam will cost $1,400 (base price) and up to $2,000 depending on the lab work, biopsies, and other tests that may be needed.
Why the rush?
The Effing Foundation will become a financial sponsor of DASAN in February, so it's very important to get the money raised and an appointment made as soon as possible.
There’s generally only a 2-3 week wait for an appointment, which is good; it usually takes months to see a specialist. This means that the sooner the money can be raised, the sooner the consult can happen. Hopefully, the doctor will have some answers on the first visit and then Caz can meaningfully re-engage with DASAN shortly thereafter.
Why isn't a regular gynecologist able to treat this?
Good question. Because Cassandra's pelvic situation is complex and general gynecologists don’t have the specialized experience needed. Ehlers-Danlos greatly impacts the pelvic region and Caz has several pelvic and genital-specific conditions, some of which are rare, which need to be taken into account for treatment. (We'll spare you the painful details here.)
The Painful Details (Feel Free to Skip This Part!)
Cassandra writes, "I can’t tell you how bad this feels without getting very explicit. My symptoms occur on the vulva and in the vagina. They include but are not limited to, burning, itching, irritation, and other forms of pain. They increase during movement, sitting, and any form of contact. There is no relief. Pain medication, including NSAIDs, are ineffective as the pain comes from a combination of nerve pain (neuralgia from the pudendal nerve) and mast cell activation. Hormone therapy and other first course treatments have also been ineffective."
Who We Are
Louis writes:
As Caz’ partners, Louis and Akio obviously hate seeing Caz in so much pain.
We hate seeing Cassandra suffer from the accompanying depression and when Caz very nearly withdrew from the grant from the Effing Foundation to start DASAN, a project about which they are so very passionate, we had to do something. The project is important in its own right, but to us, it’s most important because it’s important to Caz.
If you can help at all, please donate what you can to help Caz get the medical attention they need to mitigate the pain and get on with getting DASAN off the ground.
Thank you in advance for whatever help you can give.
A project Cassandra (Caz) has been ruminating on for two years, the Disability and Sexuality Access Network, recently became a grantee of the Effing Foundation. Thanks to Effing, DASAN will be able to have an accessible website and a whole lot more. There has been a good amount of interest in the project and DASAN's future seems promising! But Caz is having a really hard time getting anything done because of a severe flare of symptoms on November 24th.
What is a flare?
Cassandra has a genetic connective tissue disorder, Ehlers-Danlos, which has progressed to a more disabling status. This has created a domino effect and caused several co-occurring conditions, such as Mast Cell Activation Syndrome, and pudendal neuralgia, to worsen.
Caz can no longer comfortably (pain level less than 7) walk, drive, or remain upright for any significant length of time. Cassandra needs to see a very particular kind of pelvic specialist, but none of them accept insurance, let alone Medicaid. Therefore, we are trying to raise the money for an out-of-pocket visit.
How much will it cost and why is it so expensive?
The pelvic specialist Caz will be seeing is in the Washington, DC area. The initial 90-minute consult and exam will cost $1,400 (base price) and up to $2,000 depending on the lab work, biopsies, and other tests that may be needed.
Why the rush?
The Effing Foundation will become a financial sponsor of DASAN in February, so it's very important to get the money raised and an appointment made as soon as possible.
There’s generally only a 2-3 week wait for an appointment, which is good; it usually takes months to see a specialist. This means that the sooner the money can be raised, the sooner the consult can happen. Hopefully, the doctor will have some answers on the first visit and then Caz can meaningfully re-engage with DASAN shortly thereafter.
Why isn't a regular gynecologist able to treat this?
Good question. Because Cassandra's pelvic situation is complex and general gynecologists don’t have the specialized experience needed. Ehlers-Danlos greatly impacts the pelvic region and Caz has several pelvic and genital-specific conditions, some of which are rare, which need to be taken into account for treatment. (We'll spare you the painful details here.)
The Painful Details (Feel Free to Skip This Part!)
Cassandra writes, "I can’t tell you how bad this feels without getting very explicit. My symptoms occur on the vulva and in the vagina. They include but are not limited to, burning, itching, irritation, and other forms of pain. They increase during movement, sitting, and any form of contact. There is no relief. Pain medication, including NSAIDs, are ineffective as the pain comes from a combination of nerve pain (neuralgia from the pudendal nerve) and mast cell activation. Hormone therapy and other first course treatments have also been ineffective."
Who We Are
Louis writes:
As Caz’ partners, Louis and Akio obviously hate seeing Caz in so much pain.
We hate seeing Cassandra suffer from the accompanying depression and when Caz very nearly withdrew from the grant from the Effing Foundation to start DASAN, a project about which they are so very passionate, we had to do something. The project is important in its own right, but to us, it’s most important because it’s important to Caz.
If you can help at all, please donate what you can to help Caz get the medical attention they need to mitigate the pain and get on with getting DASAN off the ground.
Thank you in advance for whatever help you can give.
Fundraising team: Team Caz (3)
Akio Stribling
Organizer
Alexandria, VA
Cassandra P
Team member
Louis Shackleton
Team member
