ronkebp:

^^^^^ Very true, do you know where she lives, because we would need someone, who can reach out to her and how will give us every detailed information we will need in regards to her siyuation.

yamakuza:

0. Who is/are in contact with her?

1. When next is she coming to Lagos?

2. Which Nairalanders stay in Edo?

3. Can she send us pictures?

4. What is the extent of our involvement?

A. Get a Charity Org for her abroad?
B. Foot the whole bill?
C. Visa, ticket and logistics only?
D. Keep her comfortable and online in the meantime?

5. What is the probability of a cure?

6. What country can she get visa to? SA, India, UK or US?

7. Any luck with the current attempts to get foreign NGOs?

8. How much is she currently spending on managing this situation, and how possible will it be for us/her to sustain that long term?

maclatunji:

Wow, easy. I have asked her to set-up a blog where she can provide detailed information with photos and stuff like that. She has been reluctant I think for 2 reasons:

1. She was upset by somethings some Nairalanders said to her on the suicide thread.

2. I am of the opinion that she is afraid that some of her family members may be bitter if she 'exposes' her case to the world.

3. Irrespective of points 1 and 2, she acknowledges she needs help and told me she is working on the blog. Her family is also trying to raise money for her treatment but she does not know how much her family can come-up with.

I don't think she has read my posts on the other thread yet. Otherwise, she should be here to speak for herself.

However, her cousin is also on Nairaland. Her username is [b]Ceasyc [/b]and she has been very supportive/protective of Perx. I am sure she will provide us with additional information in this regard. I urge interested parties to please exercise some patience regarding this matter.

yamakuza:

0. Who is/are in contact with her?

1. When next is she coming to Lagos?

2. Which Nairalanders stay in Edo?

3. Can she send us pictures?

4. What is the extent of our involvement?

A. Get a Charity Org for her abroad?
B. Foot the whole bill?
C. Visa, ticket and logistics only?
D. Keep her comfortable and online in the meantime?

5. What is the probability/likelihood of a cure/solution?

6. What country can she get visa to? SA, India, UK or US?

7. Any luck with the current attempts to get foreign NGOs?

8. How much is she currently spending on managing this situation, and how possible will it be for us/her to sustain that long term?

ceasyc:

aha! thanks for inviting me here maclatunji. this is a great thread. points 1, 2, 3 are very correct. there were some suggestions on the suicide thread, though she is not so strong physically (with 2 broken/fractured legs) but she is doing things step by step or as fast as she can. She's bedridden since Oct 2011. She has contacted some hospitals in SA, Germany, India and U.S.A. Their prices/med fee varies but she is still waiting for response from SA which some1 suggested wud be cheaper for surgery and med stuff

she said she emailed mtn foundation as another person suggested too, no reply yet. She got voicemail/answering machine on doctors without borders when she called them, so she asked my sis in the states to contact them and get their email address for her. it wud be cheaper for her that way.

I'm sure Perx will come here when she sees that message that was left for us on the suicide thread. you can ask her or me any questions you like.

in re: Perx and all those encouraging/trying to support her, here and there = A BIG THANK YOU

I do not think she will have any qualms with anyone going to visit her and see her condition and medical reports/x-rays, etc. Coming to Lagos with dem two legs wud be very painful and long by road imo. because of the strike and fuel crisis, they have not found a surgeon/orthopaedic to fix her right femur yet or if they will be willing to do it Edo state/Nigeria. If they do then yay, she will then focus on the left leg and the RSD/CRSP.

thanks y'all

ceasyc:

Perx's main post/replies on other threads about her condition and treatment options

https://www.nairaland.com/nigeria?topic=826801.msg9796110#msg9796110
https://www.nairaland.com/nigeria?topic=826801.msg9796234#msg9796234
https://www.nairaland.com/nigeria?topic=826801.msg9806084#msg9806084
https://www.nairaland.com/nigeria?topic=826801.msg9806168#msg9806168
https://www.nairaland.com/nigeria?topic=826801.msg9860678#msg9860678
https://www.nairaland.com/nigeria?topic=826801.msg9883516#msg9883516
https://www.nairaland.com/nigeria?topic=836032.msg9886010#msg9886010

perx:

thanks. yes that is most of it
I am here now so anything else? kindly let me know or ask

yamakuza:

Based on the lack of responses/suggestions so far/today, i guess its safe to conclude that this $100k (N20m) project is out of our league.

[s]I would have suggested we engage corporate sponsors and maybe pay for subsidized ads on STV, AIT and NTA but the apparatus/situation on ground doesnt support engagement at such levels.[/s]

yamakuza:

ceasyc, maclatunji

and ivynwa

After the strike.
After orthopaedic treatment.
Bedridden since Oct 2011

volunteers needed

via email or BB.

Blog not neccessary, unless Afam or another volunteer can setup something like http://gofundme.com/19fn0

we need to move in stages:

1. Keep her comfortable and online
2. Find a treatment centre
3. Raise funds
4. Visa, Travel & Logistics
5. Connect her with an NGO/Support Group

There is currently no cure. Just pain management therapies

Does she have a passport?

i do, expires next year

India visas seem the easiest to get.

http://crps.com
http://ozonediscectomy.com/painmanagement/contact-us/

http://rsdcanada.org/parc/english/resources/links.html

I am in contact with them and they send me email on crsp/rsd regularly and
Reflex Sympathetic Dystrophy Guidebook - Medifocus.com, Inc. www.medifocus.com, digest@medifocus.com,
"Helen Small" <rsdinfo@becon.org> PARC ALERT: Montreal CRPS study

http://facebook.com/note.php?note_id=166289836729631


it takes $20k/yr to manage

treatment costs she's received range from $15k to $50k (asides passport, visa, tickets, bta, feeding and accomodation x 2 people + physio/ rehab = $50k extra?)

3 to 5 days of bi-weekly or monthly Ketamine IV Infusion treatment for pain mgt give 70% relief for 3 to 6 months, so she might have to relocate to Tampa, Florida or Rhode Island eventually.

maclatunji:

I am afraid that Perx has been banned by the spam bot people. Moderators should get her unbanned ASAP, abeg!

yamakuza:

The 2010 figures you got are for USA.

5 day Inpatient : $30k to $50k

10 day Outpatient: $5k + eval & clearance

1. Since that treatment lasts for 3 to 6 months, will u have to travel every 6 months?

2. Do you have family in the US?

3. How easy will a US visa be, or you prefer India?

4. How much are you currently spending now, in Naira, to manage the condition?

5. What assistance do you need from us?

6. Kindly send the pictures and other stuff to nairalandcharity @ gmail . com

7. Apart from educational materials, have you been promised anything else by the NGOs?

8. How much is the operation for the broken femur going to cost?

i wanted to answer other questions through the name perx but still banned. @the highlighted, i'll have to ask if that is true, i thought it is a one time crsp/rsd treatment which has nothing to do with other things like hip or femur surgery but I was hoping it would fix the main problem which led to the broken bones, spasms, etc.

answer to question 2, i have relatives in the states but I do not want to stay or live there. just do ketamine, rehabilitation and physio, walk and come back to no place like home which is Nigeria

answer to 3, India is cheaper when it comes to surgery and test, etc but I don't think they have the rsd/crsp/ketamine treatment

answer to number 4, it depends but drugs monthly cost over 10.000 naira (lyrical pregabalin 75mg is about 7,000 naira) and other upkeep are extra

number 5, anything, especially names of charity org or cheap/affordable but safe treatment or surgery

number 6, no problem, will do

number 7, i have not been promised anything, what is NGO anyway, sorry

number 8, still trying to find a willing surgeon here in Nigeria but no luck so far. abroad ranges from 15,000 dollars to 50,000 dollars on one leg i.e. india, europe, u.s.a but I am still waiting for SA to reply. india is the cheapest so far (surgery and tests)

anything else?

ronkebp:

What of India?, what are the price ranges for the treatment in India?, how possible is it that this illness can be treated in India Because it seems to me that US is very expensive.

Shola (f):

How about Morocco and Ghana, they have good hospitals and cheaper too. No long distance flights.

yamakuza:

^ ok, u don try. Go and rest. Before you do, what figures did you get from India?

@ house: What help/assistance can we offer/render?

ifyalways:

^I think we can help by getting her the basic little things she'd need while we keep looking for international or corporate world help.

Before then,1 or 2 of us needs to visit her and come back with real time pictures,copies of all diagnosis,medical reports,x-rays etc and ofcourse NOT to be displayed online/general consumption.

Armed with the above,we can push the case relentlessly with physical visits to MTN foundation,Zain touching lives,Doctors without borders(they have an office @ Yenagoa),office of the health Minister who by the way happens to be an Orthopadeic surgeon, etc.
This is Not something you'd have to rely on emails only,physical and consistent pushing plus prayers wud go a long way.

The exco. I believe wud have to meet,delibrate and decide on whats best to do.I'm all up and available for Physical pushing.I would try checking out infor on Ghana ie hospitals etc so we can as well look at that.

ifyalways:

^I think we can help by getting her the basic little things she'd need while we keep looking for international or corporate world help.

Before then,1 or 2 of us needs to visit her and come back with real time pictures,copies of all diagnosis,medical reports,x-rays etc and ofcourse NOT to be displayed online/general consumption.

Armed with the above,we can push the case relentlessly with physical visits to MTN foundation,Zain touching lives,Doctors without borders(they have an office @ Yenagoa),office of the health Minister who by the way happens to be an Orthopadeic surgeon, etc.
This is Not something you'd have to rely on emails only,physical and consistent pushing plus prayers wud go a long way.

The exco. I believe wud have to meet,delibrate and decide on whats best to do.I'm all up and available for Physical pushing.I would try checking out infor on Ghana ie hospitals etc so we can as well look at that.

ifyalways:

My initial post was in response to Yamakuza.And Maclatunji,just quit getting into the "goody two shoes defence mode". I don't see what's "hard" in Yamakuzas post hence your first sentence is uncalled for.

Please don't bother defending,proving or offering reasons or excuses for that sentence.Just take note and let it lie.

@Topic,Going to Edo state won't be a problem,atleast speaking for myself BUT the exco have to decide first.We hope to come up with a decision asap.I wud be passing a circular round now.